Coooooeeeeeeeeeeeeeeeee

[Guest guest]

Hiya Air

Family…old & new…I’ve been reading my eye sockets inside

out keeping up with y’all! Some of you are doing it pretty tough right

now. I do empathise & heartily hope that each of you gets on an UP drift

SOON!

Just for any

newbies…belated welcome…I’m An Aussie member on the Forum

& really appreciate how much I’ve learnt from everyone here. I can

see that you’ve already well n’ truly jumped into various threads

& are starting many new ones. Funny how the Prednisone/Vats/O2 subjects are

high on everyone’s agenda….NOT!

I am

developing an even stronger interest in the subject of the relationship between

the various known Autoimmune/Connective Tissue Diseases & PF. I for one am

a “Work in Progress” as far as a definitive diagnosis goes. There

are ever increasing signs that my PF does have an Autoimmune/CTD basis…the

big ? is which one or is it a case of Overlap Syndrome.

Right now I’m

on a quest to get a handle on how these things get diagnosed & to nut out

where I’ll find the most expertise in guiding how I respond to the

increasing body dramas that are besetting me.

I reckon I’ve

got a pair of untrustworthy malevolent GREMLINS up to No Good, resident in my

Person! They’ve decided they’re bored creating havoc in my Lungs

& even starting me on the Raynaud’s path hasn’t satisfied them

one bit!

After many

months of hoping my left ear would magically stop driving me nutty with sound

distortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing loss, aural

fullness sensation, balance problems etc etc I FINALLY got in to see an ENT

specialist who after full audiology tests has announced I have “ Inner

Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural Hearing

Loss”.

Basically that

means I can’t enjoy my precious Music as before ‘cos the Stereo

Effect is wrecked & distorted really badly…some sounds get STUCK

& echo around inside my head like crazy. Understanding Conversation with

background noise is also a big bumma but I can handle that OK…it’s

the loss of quality sound for my Music that is MUCH more depressing for me than

even the Lung situation.

Anyways the

ENT guy is REALLY suss that it’s Autoimmune related but sent me off for a

MRI to discount the awful possibility that it might be an Acoustic Nerve

Neuroma……the MRI happily discounted THAT to my relief, BUT it has

shown up some areas of damage in my sub cortex compatible with ” White

Matter Ischaemia or Secondary Demyelination due to a number of possible causes”.

Three Guesses

as to what is included on THAT list (MS, SLE/Lupus, Systemic Scleroderma,

Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease etc)….next

stop a Neurologist who will check on how DEMENTED I am already…well HECK

everyone that’s been on this Forum a while already knows the answer to

THAT…my Scilliness has apparent from the start…

But those darn

Gremlins have been mucking about in my Bladder as well….anyone heard of ‘Interstitial

Cystitis’…my Gyne man investigated the inside of my bladder when he

was doing my gyne surgery…he said it looked distinctly ‘WRONG’

on the lining but not quite like anything he’s seen before…so THAT

will get followed up with a UROLOGIST…..

See that’s

IT about these darn Connective Tissue Disorders…they ATTACK indiscriminately

ANYWHERE there’s Connective Tissue…well that’s a great

BIG playing Field for GREMLINS hey!

What the Gremlins

are really skilled at is covering their tracks…”hey’’,

they mutter, ”don’t let her Titers get too high or they’ll

find out about us through the Autoantibody Blood tests they do on her annually.. &

lets jump about all over her body so she just thinks she’s imagining all

this stuff..her GP will start thinking she’s a Full Blown Hypochondriac

& that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’

So, as yet I

remain undiagnosed with anything specific but there are so many Red Flags

waving that those Gremlins better watch out We’re onto ‘em!

in

Oz

IPF:

Fibrotic NSIP/UIP ??

Reynauds'

May

2007

[Guest guest]

!Glad to hear from you! Even weirder, after what you just related I'm beginning to think we are related! Gremlins, autoimmune/CTD yes yes yes!!!!! Overlap syndrome now there is a name I can really get in to...everything I have overlaps everything else! I am really really sorry to hear (no pun intended he he) about the long-winded hearing problem, messing with the music is a big no no! As for being demented, heck here's hoping you are only Abbe Normal like the rest of us. I have heard of interstitial cystitis but I can't remember who or why. May be just something I read about since I have my own bunch of bladder probs.Seriously I hope they find out what all the red flags are soon and that those damn Gremlins get the boot! I enjoy your posts too much and you seem like such a kindred soul. Feel better soonest!Dyane Phoenix ipf 02>> > > Hiya Air Family.old & new.I've been reading my eye sockets inside out> keeping up with y'all! Some of you are doing it pretty tough right now. I do> empathise & heartily hope that each of you gets on an UP drift SOON!> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum & > really appreciate how much I've learnt from everyone here. I can see that> you've already well n' truly jumped into various threads & are starting many> new ones. Funny how the Prednisone/Vats/O2 subjects are high on everyone's> agenda..NOT!> > I am developing an even stronger interest in the subject of the relationship> between the various known Autoimmune/Connective Tissue Diseases & PF. I for> one am a "Work in Progress" as far as a definitive diagnosis goes. There are> ever increasing signs that my PF does have an Autoimmune/CTD basis.the big ?> is which one or is it a case of Overlap Syndrome. > > Right now I'm on a quest to get a handle on how these things get diagnosed & > to nut out where I'll find the most expertise in guiding how I respond to> the increasing body dramas that are besetting me. > > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No Good,> resident in my Person! They've decided they're bored creating havoc in my> Lungs & even starting me on the Raynaud's path hasn't satisfied them one> bit!> > After many months of hoping my left ear would magically stop driving me> nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the time)> , hearing loss, aural fullness sensation, balance problems etc etc I FINALLY> got in to see an ENT specialist who after full audiology tests has announced> I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible,> Sensorineural Hearing Loss".> > Basically that means I can't enjoy my precious Music as before 'cos the> Stereo Effect is wrecked & distorted really badly.some sounds get STUCK & > echo around inside my head like crazy. Understanding Conversation with> background noise is also a big bumma but I can handle that OK.it's the loss> of quality sound for my Music that is MUCH more depressing for me than even> the Lung situation. > > Anyways the ENT guy is REALLY suss that it's Autoimmune related but sent me> off for a MRI to discount the awful possibility that it might be an Acoustic> Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it has> shown up some areas of damage in my sub cortex compatible with " White> Matter Ischaemia or Secondary Demyelination due to a number of possible> causes".> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus, Systemic> Scleroderma, Sjoren's as well as just plain old Dementia, Cardio Vascular> Disease etc)..next stop a Neurologist who will check on how DEMENTED I am> already.well HECK everyone that's been on this Forum a while already knows> the answer to THAT.my Scilliness has apparent from the start.> > But those darn Gremlins have been mucking about in my Bladder as> well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated the> inside of my bladder when he was doing my gyne surgery.he said it looked> distinctly 'WRONG' on the lining but not quite like anything he's seen> before.so THAT will get followed up with a UROLOGIST...> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> indiscriminately ANYWHERE there's Connective Tissue.well that's a great BIG> playing Field for GREMLINS hey!> > What the Gremlins are really skilled at is covering their tracks."hey'',> they mutter, "don't let her Titers get too high or they'll find out about us> through the Autoantibody Blood tests they do on her annually.. & lets jump> about all over her body so she just thinks she's imagining all this> stuff..her GP will start thinking she's a Full Blown Hypochondriac & that> gives us MORE time to have FUN.Wheeeeeeeeeeee!'' > > So, as yet I remain undiagnosed with anything specific but there are so many> Red Flags waving that those Gremlins better watch out We're onto 'em!> > > > in Oz > > IPF: Fibrotic NSIP/UIP ??> Reynauds' > May 2007>

[Guest guest]

,

sista from OZ How in the world can you keep all of those

gremlins up in the air?

You are doing a great job of juggling!!!

Meanwhile what are all those specialists going to do even if they can

figure

out what is what?

Any of them give you any ideas as to treatment? Of course not!!!

You're quite a puzzle...not crazy...just a puzzlement!!!

It was good to see your post...how are your wrists?

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Francis wrote:

Hiya

Air

Family…old & new…I’ve been reading my eye sockets inside

out keeping up with y’all! Some of you are doing it pretty tough right

now. I do empathise & heartily hope that each of you gets on an UP

drift

SOON!

Just

for any

newbies…belated welcome…I’m An Aussie member on the Forum

& really appreciate how much I’ve learnt from everyone here. I can

see that you’ve already well n’ truly jumped into various threads

& are starting many new ones. Funny how the Prednisone/Vats/O2

subjects are

high on everyone’s agenda….NOT!

I

am

developing an even stronger interest in the subject of the relationship

between

the various known Autoimmune/Connective Tissue Diseases & PF.

I for one am

a “Work in Progress” as far as a definitive diagnosis goes. There

are ever increasing signs that my PF does have an Autoimmune/CTD

basis…the

big ? is which one or is it a case of Overlap Syndrome.

Right

now I’m

on a quest to get a handle on how these things get diagnosed & to

nut out

where I’ll find the most expertise in guiding how I respond to the

increasing body dramas that are besetting me.

I

reckon I’ve

got a pair of untrustworthy malevolent GREMLINS up to No Good, resident

in my

Person! They’ve decided they’re bored creating havoc in my Lungs

& even starting me on the Raynaud’s path hasn’t satisfied them

one bit!

After

many

months of hoping my left ear would magically stop driving me nutty with

sound

distortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing

loss, aural

fullness sensation, balance problems etc etc I FINALLY got in to see an

ENT

specialist who after full audiology tests has announced I have “ Inner

Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible,

Sensorineural Hearing

Loss”.

Basically

that

means I can’t enjoy my precious Music as before ‘cos the Stereo

Effect is wrecked & distorted really badly…some sounds get STUCK

& echo around inside my head like crazy. Understanding Conversation

with

background noise is also a big bumma but I can handle that OK…it’s

the loss of quality sound for my Music that is MUCH more depressing for

me than

even the Lung situation.

Anyways

the

ENT guy is REALLY suss that it’s Autoimmune related but sent me off for

a

MRI to discount the awful possibility that it might be an Acoustic

Nerve

Neuroma……the MRI happily discounted THAT to my relief, BUT it has

shown up some areas of damage in my sub cortex compatible with ” White

Matter Ischaemia or Secondary Demyelination due to a number of possible

causes”.

Three

Guesses

as to what is included on THAT list (MS, SLE/Lupus, Systemic

Scleroderma,

Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease

etc)….next

stop a Neurologist who will check on how DEMENTED I am already…well

HECK

everyone that’s been on this Forum a while already knows the answer to

THAT…my Scilliness has apparent from the start…

But

those darn

Gremlins have been mucking about in my Bladder as well….anyone heard of

‘Interstitial

Cystitis’…my Gyne man investigated the inside of my bladder when he

was doing my gyne surgery…he said it looked distinctly ‘WRONG’

on the lining but not quite like anything he’s seen before…so THAT

will get followed up with a UROLOGIST…..

See

that’s

IT about these darn Connective Tissue Disorders…they ATTACK

indiscriminately

ANYWHERE there’s Connective Tissue…well that’s a great

BIG playing Field for GREMLINS hey!

What

the Gremlins

are really skilled at is covering their tracks…”hey’’,

they mutter, ”don’t let her Titers get too high or they’ll

find out about us through the Autoantibody Blood tests they do on her

annually.. &

lets jump about all over her body so she just thinks she’s imagining

all

this stuff..her GP will start thinking she’s a Full Blown Hypochondriac

& that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’

So,

as yet I

remain undiagnosed with anything specific but there are so many Red

Flags

waving that those Gremlins better watch out We’re onto ‘em!

in

Oz

IPF:

Fibrotic NSIP/UIP ??

Reynauds'

May

2007

[Guest guest]

Gosh Dyanne...wotcha Doin UP so late.....surely it's sleepy time where you are??????

We perhaps should do a wee Database for those ofus with 'Red Flags' or clarified Autoimmune disease underlying the PF...it would be interesting & perhaps helpful to see it all collected ion one spot.

I know I've noticed others with various CTD in their signatures bu t it's hard to keep them all in my scone at once!

Nice to hear you feel in 'kindred spirit with me' ...isn't it amazing how we can 'sense' one another in cyberspace...are you on Facebook? That's a good way to have more of a personal connection. Feel free to e-mail me off Forum to exchange more 'lifestyle' stuff!

Cheers,

in Oz

> >> >> >> > Hiya Air Family.old & new.I've been reading my eye sockets inside out> > keeping up with y'all! Some of you are doing it pretty tough right> now. I do> > empathise & heartily hope that each of you gets on an UP drift SOON!> >> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum> & > > really appreciate how much I've learnt from everyone here. I can see> that> > you've already well n' truly jumped into various threads & are> starting many> > new ones. Funny how the Prednisone/Vats/O2 subjects are high on> everyone's> > agenda..NOT!> >> > I am developing an even stronger interest in the subject of the> relationship> > between the various known Autoimmune/Connective Tissue Diseases & PF.> I for> > one am a "Work in Progress" as far as a definitive diagnosis goes.> There are> > ever increasing signs that my PF does have an Autoimmune/CTD basis.the> big ?> > is which one or is it a case of Overlap Syndrome.> >> > Right now I'm on a quest to get a handle on how these things get> diagnosed & > > to nut out where I'll find the most expertise in guiding how I respond> to> > the increasing body dramas that are besetting me.> >> > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No> Good,> > resident in my Person! They've decided they're bored creating havoc in> my> > Lungs & even starting me on the Raynaud's path hasn't satisfied them> one> > bit!> >> > After many months of hoping my left ear would magically stop driving> me> > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the> time)> > , hearing loss, aural fullness sensation, balance problems etc etc I> FINALLY> > got in to see an ENT specialist who after full audiology tests has> announced> > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,> Irreversible,> > Sensorineural Hearing Loss".> >> > Basically that means I can't enjoy my precious Music as before 'cos> the> > Stereo Effect is wrecked & distorted really badly.some sounds get> STUCK & > > echo around inside my head like crazy. Understanding Conversation with> > background noise is also a big bumma but I can handle that OK.it's the> loss> > of quality sound for my Music that is MUCH more depressing for me than> even> > the Lung situation.> >> > Anyways the ENT guy is REALLY suss that it's Autoimmune related but> sent me> > off for a MRI to discount the awful possibility that it might be an> Acoustic> > Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it> has> > shown up some areas of damage in my sub cortex compatible with " White> > Matter Ischaemia or Secondary Demyelination due to a number of> possible> > causes".> >> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,> Systemic> > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio> Vascular> > Disease etc)..next stop a Neurologist who will check on how DEMENTED I> am> > already.well HECK everyone that's been on this Forum a while already> knows> > the answer to THAT.my Scilliness has apparent from the start.> >> > But those darn Gremlins have been mucking about in my Bladder as> > well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated> the> > inside of my bladder when he was doing my gyne surgery.he said it> looked> > distinctly 'WRONG' on the lining but not quite like anything he's seen> > before.so THAT will get followed up with a UROLOGIST...> >> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> > indiscriminately ANYWHERE there's Connective Tissue.well that's a> great BIG> > playing Field for GREMLINS hey!> >> > What the Gremlins are really skilled at is covering their> tracks."hey'',> > they mutter, "don't let her Titers get too high or they'll find out> about us> > through the Autoantibody Blood tests they do on her annually.. & lets> jump> > about all over her body so she just thinks she's imagining all this> > stuff..her GP will start thinking she's a Full Blown Hypochondriac & > that> > gives us MORE time to have FUN.Wheeeeeeeeeeee!''> >> > So, as yet I remain undiagnosed with anything specific but there are> so many> > Red Flags waving that those Gremlins better watch out We're onto 'em!> >> >> >> > in Oz> >> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'> > May 2007> >>

[Guest guest]

Hiya Sista....are you keeping the Midnight Oil burning as well as Dyane!

Funny you should ask about my 'slit wrists'......just home last night from having the right one done.....I'm very proud that i'm able to type with my lazy, under-practised, left hand.

It seems so far that this second job will go a lot smoother...no overblown fat cheerio fingers this time...Yet!) I've deliberately had this last one done while still in recovery mode from my recent gyne surgery....having my right hand out of action will force me to keep taking things easy & NOT start lifting heavy stuff like watering cans, shopping, bedding etc etc...gardening is OUT as is cooking...oh DEARY, DEARY ME!

Yep those darn Gremlins..in Oz we have a great device for swatting flys...I reckon I'll have to work on a 'Organic Gremlin Swatter'.

As far as treatment options go it's really vital to know the range of CTD's involved 'cos the drugs used for each type can be contra-indicated. I'm glad I haven't given in to previous pressure to 'Trial' Prednisone ',cos apparently, it's one such drug that's not a good idea with Systemic Scleroderma because of possible renal failure.

If a person has 'Overlap' Syndrome then obviuosly drug treatment becomes quite complex...which bit gets priority?

At least there are a couple of Clinics where there are Teams of Specialists looking at Cardio/Pulmonary/CTD combined Disease profiles. reckon I'll be heading to one of those. Brisbane, Sydney, Melbourne.....

I also want to find a top notch Hearing Aid Provider to see if the latest digital technology can help restore some of my appreciation of Music. Unfortunately low frequency SNHL is very rare & therefore there's not financial incentive to research & develop these sorts of hearing aids.

Why do I keep getting THAT word thrown at me....RARE!

It's beginning to sound like a cop-out...go away we can't help you it's too RARE!

I've always wondered whether you'd develop more CTD symptoms yourself because of your Raynauds......

lots love to you Sista.- Lady Lioness of Zioness..

> > > >> > Hiya Air Family...old & new...I've been reading my eye sockets inside > > out keeping up with y'all! Some of you are doing it pretty tough right > > now. I do empathise & heartily hope that each of you gets on an UP > > drift SOON!> >> > Just for any newbies...belated welcome...I'm An Aussie member on the > > Forum & really appreciate how much I've learnt from everyone here. I > > can see that you've already well n' truly jumped into various threads > > & are starting many new ones. Funny how the Prednisone/Vats/O2 > > subjects are high on everyone's agenda....NOT!> >> > I am developing an even stronger interest in the subject of the > > relationship between the various known Autoimmune/Connective Tissue > > Diseases & PF. I for one am a "Work in Progress" as far as a > > definitive diagnosis goes. There are ever increasing signs that my PF > > does have an Autoimmune/CTD basis...the big ? is which one or is it a > > case of Overlap Syndrome.> >> > Right now I'm on a quest to get a handle on how these things get > > diagnosed & to nut out where I'll find the most expertise in guiding > > how I respond to the increasing body dramas that are besetting me.> >> > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No > > Good, resident in my Person! They've decided they're bored creating > > havoc in my Lungs & even starting me on the Raynaud's path hasn't > > satisfied them one bit!> >> > After many months of hoping my left ear would magically stop driving > > me nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL > > the time) , hearing loss, aural fullness sensation, balance problems > > etc etc I FINALLY got in to see an ENT specialist who after full > > audiology tests has announced I have " Inner Ear, Sudden Onset, > > Unilateral, Low Frequency, Irreversible, Sensorineural Hearing Loss".> >> > Basically that means I can't enjoy my precious Music as before 'cos > > the Stereo Effect is wrecked & distorted really badly...some sounds > > get STUCK & echo around inside my head like crazy. Understanding > > Conversation with background noise is also a big bumma but I can > > handle that OK...it's the loss of quality sound for my Music that is > > MUCH more depressing for me than even the Lung situation.> >> > Anyways the ENT guy is REALLY suss that it's Autoimmune related but > > sent me off for a MRI to discount the awful possibility that it might > > be an Acoustic Nerve Neuroma......the MRI happily discounted THAT to > > my relief, BUT it has shown up some areas of damage in my sub cortex > > compatible with " White Matter Ischaemia or Secondary Demyelination > > due to a number of possible causes".> >> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus, > > Systemic Scleroderma, Sjoren's as well as just plain old Dementia, > > Cardio Vascular Disease etc)....next stop a Neurologist who will check > > on how DEMENTED I am already...well HECK everyone that's been on this > > Forum a while already knows the answer to THAT...my Scilliness has > > apparent from the start...> >> > But those darn Gremlins have been mucking about in my Bladder as > > well....anyone heard of 'Interstitial Cystitis'...my Gyne man > > investigated the inside of my bladder when he was doing my gyne > > surgery...he said it looked distinctly 'WRONG' on the lining but not > > quite like anything he's seen before...so THAT will get followed up > > with a UROLOGIST.....> >> > See that's IT about these darn Connective Tissue Disorders...they > > ATTACK indiscriminately ANYWHERE there's Connective Tissue...well > > that's a great BIG playing Field for GREMLINS hey!> >> > What the Gremlins are really skilled at is covering their > > tracks..."hey'', they mutter, "don't let her Titers get too high or > > they'll find out about us through the Autoantibody Blood tests they do > > on her annually.. & lets jump about all over her body so she just > > thinks she's imagining all this stuff..her GP will start thinking > > she's a Full Blown Hypochondriac & that gives us MORE time to have > > FUN...Wheeeeeeeeeeee!''> >> > So, as yet I remain undiagnosed with anything specific but there are > > so many Red Flags waving that those Gremlins better watch out We're > > onto 'em!> >> > > >> > /*/ in Oz /*/*/> > // ///**/> > //IPF: Fibrotic NSIP/UIP ??//> > //Reynauds' //> > //May 2007///* > >> > > >> >>

[Guest guest]

GINA!!!!!!

So glad to have you back and posting again. I've been thinking of you lately. Done with the surgeries for now? Recovery mode for awhile...hopefully a break for you.

You may have read but I'll say it again the doctors that I see at Duke have said that true IPF, that is pulmonary fibrosis witha truly unknown cause is extremely rare in those under the 55-60 age range, especially women. That pulmonary fibrosis in people like us is almost always associated with a auto-immune/connective tissue disease. That's what made my doctor so aggressive in trying to figure out what was going on with me. Like you I had at best ambiguous blood work for a long time, but finally got some answers with the myositis panel and then the muscle biopsy.

I know you well enough to know that you will get your answers and make decisions that are best for you. I do hope that there is something they can do for you so that you can enjoy your music again....that's truly depressing. It's a full time job keeping the gremlins at bay isn't it?

So happy you are back with us! You have been missed!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support ; pulmonaryfibrosis Sent: Thursday, August 20, 2009 12:04:10 AMSubject: Coooooeeeeeeeeeeeeeeeee

Hiya Air Family…old & new…I’ve been reading my eye sockets inside out keeping up with y’all! Some of you are doing it pretty tough right now. I do empathise & heartily hope that each of you gets on an UP drift SOON!

Just for any newbies…belated welcome…I’m An Aussie member on the Forum & really appreciate how much I’ve learnt from everyone here. I can see that you’ve already well n’ truly jumped into various threads & are starting many new ones. Funny how the Prednisone/Vats/ O2 subjects are high on everyone’s agenda….NOT!

I am developing an even stronger interest in the subject of the relationship between the various known Autoimmune/Connecti ve Tissue Diseases & PF. I for one am a “Work in Progress†as far as a definitive diagnosis goes. There are ever increasing signs that my PF does have an Autoimmune/CTD basis…the big ? is which one or is it a case of Overlap Syndrome.

Right now I’m on a quest to get a handle on how these things get diagnosed & to nut out where I’ll find the most expertise in guiding how I respond to the increasing body dramas that are besetting me.

I reckon I’ve got a pair of untrustworthy malevolent GREMLINS up to No Good, resident in my Person! They’ve decided they’re bored creating havoc in my Lungs & even starting me on the Raynaud’s path hasn’t satisfied them one bit!

After many months of hoping my left ear would magically stop driving me nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing loss, aural fullness sensation, balance problems etc etc I FINALLY got in to see an ENT specialist who after full audiology tests has announced I have “ Inner Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural Hearing Lossâ€.

Basically that means I can’t enjoy my precious Music as before ‘cos the Stereo Effect is wrecked & distorted really badly…some sounds get STUCK & echo around inside my head like crazy. Understanding Conversation with background noise is also a big bumma but I can handle that OK…it’s the loss of quality sound for my Music that is MUCH more depressing for me than even the Lung situation.

Anyways the ENT guy is REALLY suss that it’s Autoimmune related but sent me off for a MRI to discount the awful possibility that it might be an Acoustic Nerve Neuroma……the MRI happily discounted THAT to my relief, BUT it has shown up some areas of damage in my sub cortex compatible with †White Matter Ischaemia or Secondary Demyelination due to a number of possible causesâ€.

Three Guesses as to what is included on THAT list (MS, SLE/Lupus, Systemic Scleroderma, Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease etc)….next stop a Neurologist who will check on how DEMENTED I am already…well HECK everyone that’s been on this Forum a while already knows the answer to THAT…my Scilliness has apparent from the start…

But those darn Gremlins have been mucking about in my Bladder as well….anyone heard of ‘Interstitial Cystitis’…my Gyne man investigated the inside of my bladder when he was doing my gyne surgery…he said it looked distinctly ‘WRONG’ on the lining but not quite like anything he’s seen before…so THAT will get followed up with a UROLOGIST…..

See that’s IT about these darn Connective Tissue Disorders…they ATTACK indiscriminately ANYWHERE there’s Connective Tissue…well that’s a great BIG playing Field for GREMLINS hey!

What the Gremlins are really skilled at is covering their tracks…â€hey’’, they mutter, â€don’t let her Titers get too high or they’ll find out about us through the Autoantibody Blood tests they do on her annually.. & lets jump about all over her body so she just thinks she’s imagining all this stuff..her GP will start thinking she’s a Full Blown Hypochondriac & that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’

So, as yet I remain undiagnosed with anything specific but there are so many Red Flags waving that those Gremlins better watch out We’re onto ‘em!

in Oz IPF: Fibrotic NSIP/UIP ??Reynauds' May 2007

[Guest guest]

Hi ,I've been reading the posts for about four months. Wow, you must have a notebook to keep track of all those doctors, tests, meds, etc. I know I do. It's the only way to keep track of doctors, tests, results, etc.This all can be an enhausting process, can't it?Despite it all you seem to be handling it well. What else can we do!Hope you find an anwser and that the gremlins calm themselves and find something else to do besides pick on you.PJ in Ohio, 54, IPF '09, Sjogren's '95 Coooooeeeeeeeeeeeeeeeee

Hiya AirFamily…old & new…I’ve been reading my eye sockets insideout keeping up with y’all! Some of you are doing it pretty tough rightnow. I do empathise & heartily hope that each of you gets on an UP driftSOON!

Just for anynewbies…belated welcome…I’m An Aussie member on the Forum & really appreciate how much I’ve learnt from everyone here. I cansee that you’ve already well n’ truly jumped into various threads & are starting many new ones. Funny how the Prednisone/Vats/O2 subjects arehigh on everyone’s agenda….NOT!

I amdeveloping an even stronger interest in the subject of the relationship betweenthe various known Autoimmune/Connective Tissue Diseases & PF. I for one ama “Work in Progress†as far as a definitive diagnosis goes. Thereare ever increasing signs that my PF does have an Autoimmune/CTD basis…thebig ? is which one or is it a case of Overlap Syndrome.

Right now I’mon a quest to get a handle on how these things get diagnosed & to nut outwhere I’ll find the most expertise in guiding how I respond to theincreasing body dramas that are besetting me.

I reckon I’vegot a pair of untrustworthy malevolent GREMLINS up to No Good, resident in myPerson! They’ve decided they’re bored creating havoc in my Lungs & even starting me on the Raynaud’s path hasn’t satisfied themone bit!

After manymonths of hoping my left ear would magically stop driving me nutty with sounddistortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing loss, auralfullness sensation, balance problems etc etc I FINALLY got in to see an ENTspecialist who after full audiology tests has announced I have “ InnerEar, Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural HearingLossâ€.

Basically thatmeans I can’t enjoy my precious Music as before ‘cos the StereoEffect is wrecked & distorted really badly…some sounds get STUCK & echo around inside my head like crazy. Understanding Conversation withbackground noise is also a big bumma but I can handle that OK…it’sthe loss of quality sound for my Music that is MUCH more depressing for me thaneven the Lung situation.

Anyways theENT guy is REALLY suss that it’s Autoimmune related but sent me off for aMRI to discount the awful possibility that it might be an Acoustic NerveNeuroma……the MRI happily discounted THAT to my relief, BUT it hasshown up some areas of damage in my sub cortex compatible with †WhiteMatter Ischaemia or Secondary Demyelination due to a number of possible causesâ€.

Three Guessesas to what is included on THAT list (MS, SLE/Lupus, Systemic Scleroderma,Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease etc)….nextstop a Neurologist who will check on how DEMENTED I am already…well HECKeveryone that’s been on this Forum a while already knows the answer toTHAT…my Scilliness has apparent from the start…

But those darnGremlins have been mucking about in my Bladder as well….anyone heard of ‘InterstitialCystitis’…my Gyne man investigated the inside of my bladder when hewas doing my gyne surgery…he said it looked distinctly ‘WRONG’on the lining but not quite like anything he’s seen before…so THATwill get followed up with a UROLOGIST…..

See that’sIT about these darn Connective Tissue Disorders…they ATTACK indiscriminatelyANYWHERE there’s Connective Tissue…well that’s a greatBIG playing Field for GREMLINS hey!

What the Gremlinsare really skilled at is covering their tracks…â€hey’’,they mutter, â€don’t let her Titers get too high or they’llfind out about us through the Autoantibody Blood tests they do on her annually.. & lets jump about all over her body so she just thinks she’s imagining allthis stuff..her GP will start thinking she’s a Full Blown Hypochondriac & that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’

So, as yet Iremain undiagnosed with anything specific but there are so many Red Flagswaving that those Gremlins better watch out We’re onto ‘em!

inOz IPF:Fibrotic NSIP/UIP ??Reynauds' May2007

[Guest guest]

GIO

I knew we were kindred messed up complex insane upside down across the

planet types.

Sorry to hear your list but sounds all too familiar as another test,

another symptom, and still nothing more conclusive. I just had another

lab that had been negative turn positive and know my rheumatologist will

want to biopsy my entire body when he sees it. I had cholesteotoma in my

ear and surgeries in 97 and 98 so do understand the tinnitus and hearing

loss.

As to your dementia, its a matter of which persona you choose that day.

Gio quite has her act together and will pass with flying colors. But

SGIO could send the doctor running for cover, confused, with readings

he'd never seen and had no idea how to interpret. What a mind game you

could play with him. Speak of the Gremlins, talk about your Barking

" slippas " , throw in some about our round the world New Years Eve Party

and the magical ship. By the end of the day the doctor would probably be

the one seeking the testing.

>

>

>

> Hiya Air Family.old & new.I've been reading my eye sockets inside out

> keeping up with y'all! Some of you are doing it pretty tough right

now. I do

> empathise & heartily hope that each of you gets on an UP drift SOON!

>

> Just for any newbies.belated welcome.I'm An Aussie member on the Forum

&

> really appreciate how much I've learnt from everyone here. I can see

that

> you've already well n' truly jumped into various threads & are

starting many

> new ones. Funny how the Prednisone/Vats/O2 subjects are high on

everyone's

> agenda..NOT!

>

> I am developing an even stronger interest in the subject of the

relationship

> between the various known Autoimmune/Connective Tissue Diseases & PF.

I for

> one am a " Work in Progress " as far as a definitive diagnosis goes.

There are

> ever increasing signs that my PF does have an Autoimmune/CTD basis.the

big ?

> is which one or is it a case of Overlap Syndrome.

>

> Right now I'm on a quest to get a handle on how these things get

diagnosed &

> to nut out where I'll find the most expertise in guiding how I respond

to

> the increasing body dramas that are besetting me.

>

> I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No

Good,

> resident in my Person! They've decided they're bored creating havoc in

my

> Lungs & even starting me on the Raynaud's path hasn't satisfied them

one

> bit!

>

> After many months of hoping my left ear would magically stop driving

me

> nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the

time)

> , hearing loss, aural fullness sensation, balance problems etc etc I

FINALLY

> got in to see an ENT specialist who after full audiology tests has

announced

> I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,

Irreversible,

> Sensorineural Hearing Loss " .

>

> Basically that means I can't enjoy my precious Music as before 'cos

the

> Stereo Effect is wrecked & distorted really badly.some sounds get

STUCK &

> echo around inside my head like crazy. Understanding Conversation with

> background noise is also a big bumma but I can handle that OK.it's the

loss

> of quality sound for my Music that is MUCH more depressing for me than

even

> the Lung situation.

>

> Anyways the ENT guy is REALLY suss that it's Autoimmune related but

sent me

> off for a MRI to discount the awful possibility that it might be an

Acoustic

> Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it

has

> shown up some areas of damage in my sub cortex compatible with " White

> Matter Ischaemia or Secondary Demyelination due to a number of

possible

> causes " .

>

> Three Guesses as to what is included on THAT list (MS, SLE/Lupus,

Systemic

> Scleroderma, Sjoren's as well as just plain old Dementia, Cardio

Vascular

> Disease etc)..next stop a Neurologist who will check on how DEMENTED I

am

> already.well HECK everyone that's been on this Forum a while already

knows

> the answer to THAT.my Scilliness has apparent from the start.

>

> But those darn Gremlins have been mucking about in my Bladder as

> well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated

the

> inside of my bladder when he was doing my gyne surgery.he said it

looked

> distinctly 'WRONG' on the lining but not quite like anything he's seen

> before.so THAT will get followed up with a UROLOGIST...

>

> See that's IT about these darn Connective Tissue Disorders.they ATTACK

> indiscriminately ANYWHERE there's Connective Tissue.well that's a

great BIG

> playing Field for GREMLINS hey!

>

> What the Gremlins are really skilled at is covering their

tracks. " hey'',

> they mutter, " don't let her Titers get too high or they'll find out

about us

> through the Autoantibody Blood tests they do on her annually.. & lets

jump

> about all over her body so she just thinks she's imagining all this

> stuff..her GP will start thinking she's a Full Blown Hypochondriac &

that

> gives us MORE time to have FUN.Wheeeeeeeeeeee!''

>

> So, as yet I remain undiagnosed with anything specific but there are

so many

> Red Flags waving that those Gremlins better watch out We're onto 'em!

>

>

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP ??

> Reynauds'

> May 2007

>

[Guest guest]

glad to see you posting again

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: CoooooeeeeeeeeeeeeeeeeeTo: Breathe-Support Date: Thursday, August 20, 2009, 9:34 AM

GIOI knew we were kindred messed up complex insane upside down across theplanet types.Sorry to hear your list but sounds all too familiar as another test,another symptom, and still nothing more conclusive. I just had anotherlab that had been negative turn positive and know my rheumatologist willwant to biopsy my entire body when he sees it. I had cholesteotoma in myear and surgeries in 97 and 98 so do understand the tinnitus and hearingloss.As to your dementia, its a matter of which persona you choose that day.Gio quite has her act together and will pass with flying colors. ButSGIO could send the doctor running for cover, confused, with readingshe'd never seen and had no idea how to interpret. What a mind game youcould play with him. Speak of the Gremlins, talk about your Barking"slippas", throw in some about our round the world New Years Eve Partyand the magical ship. By the

end of the day the doctor would probably bethe one seeking the testing.>>>> Hiya Air Family.old & new.I've been reading my eye sockets inside out> keeping up with y'all! Some of you are doing it pretty tough rightnow. I do> empathise & heartily hope that each of you gets on an UP drift SOON!>> Just for any newbies.belated welcome.I'm An Aussie member on the Forum & > really appreciate how much I've learnt from everyone here. I can seethat> you've already well n' truly jumped into various threads & arestarting many> new ones. Funny how the Prednisone/Vats/ O2 subjects are high

oneveryone's> agenda..NOT!>> I am developing an even stronger interest in the subject of therelationship> between the various known Autoimmune/Connecti ve Tissue Diseases & PF.I for> one am a "Work in Progress" as far as a definitive diagnosis goes.There are> ever increasing signs that my PF does have an Autoimmune/CTD basis.thebig ?> is which one or is it a case of Overlap Syndrome.>> Right now I'm on a quest to get a handle on how these things getdiagnosed & > to nut out where I'll find the most expertise in guiding how I respondto> the increasing body dramas that are besetting me.>> I reckon I've got a pair of untrustworthy malevolent GREMLINS up to NoGood,> resident in my Person! They've decided they're bored creating havoc inmy> Lungs & even starting me on the Raynaud's path hasn't satisfied

themone> bit!>> After many months of hoping my left ear would magically stop drivingme> nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL thetime)> , hearing loss, aural fullness sensation, balance problems etc etc IFINALLY> got in to see an ENT specialist who after full audiology tests hasannounced> I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,Irreversible,> Sensorineural Hearing Loss".>> Basically that means I can't enjoy my precious Music as before 'costhe> Stereo Effect is wrecked & distorted really badly.some sounds getSTUCK & > echo around inside my head like crazy. Understanding Conversation with> background noise is also a big bumma but I can handle that OK.it's theloss> of quality sound for my Music that is MUCH more depressing for me thaneven> the Lung

situation.>> Anyways the ENT guy is REALLY suss that it's Autoimmune related butsent me> off for a MRI to discount the awful possibility that it might be anAcoustic> Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT ithas> shown up some areas of damage in my sub cortex compatible with " White> Matter Ischaemia or Secondary Demyelination due to a number ofpossible> causes".>> Three Guesses as to what is included on THAT list (MS, SLE/Lupus,Systemic> Scleroderma, Sjoren's as well as just plain old Dementia, CardioVascular> Disease etc)..next stop a Neurologist who will check on how DEMENTED Iam> already.well HECK everyone that's been on this Forum a while alreadyknows> the answer to THAT.my Scilliness has apparent from the start.>> But those darn Gremlins have been mucking about in my Bladder as>

well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigatedthe> inside of my bladder when he was doing my gyne surgery.he said itlooked> distinctly 'WRONG' on the lining but not quite like anything he's seen> before.so THAT will get followed up with a UROLOGIST...>> See that's IT about these darn Connective Tissue Disorders.they ATTACK> indiscriminately ANYWHERE there's Connective Tissue.well that's agreat BIG> playing Field for GREMLINS hey!>> What the Gremlins are really skilled at is covering theirtracks."hey' ',> they mutter, "don't let her Titers get too high or they'll find outabout us> through the Autoantibody Blood tests they do on her annually.. & letsjump> about all over her body so she just thinks she's imagining all this> stuff..her GP will start thinking she's a Full Blown Hypochondriac & that> gives

us MORE time to have FUN.Wheeeeeeeeeeee! ''>> So, as yet I remain undiagnosed with anything specific but there areso many> Red Flags waving that those Gremlins better watch out We're onto 'em!>>>> in Oz>> IPF: Fibrotic NSIP/UIP ??> Reynauds'> May 2007>__________________________________________________

[Guest guest]

, My pulmodude has finally

said that I probably do not have "real reynauds"

Just poor circulation...due to the negative results of the A/I

bloodwork. So, you are the first to see my latest update

on the signature...I've erased the reference to the Reynauds.

You are really brave to be undergoing so much surgery in such a short

period of time...both wrists and the "lady"

stuff too!!!So much anesthesia in a short time too. Be careful...let

everyone else do everything!!!

You'd better be good!

We have great news...Our son Adam and daughter -in- law

Ilana are expecting again!!!!

Darah will have a new brother or sister in March!!! New baby on the

way!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

grangi49 wrote:

Hiya Sista....are you

keeping the Midnight Oil burning as well as Dyane!

Funny you should ask

about my 'slit wrists'......just home last night from having the

right one done.....I'm very proud that i'm able to type with my lazy,

under-practised, left hand.

It seems so far that

this second job will go a lot smoother...no overblown fat cheerio

fingers this time...Yet!) I've deliberately had this last one done

while still in recovery mode from my recent gyne surgery....having my

right hand out of action will force me to keep taking things easy &

NOT start lifting heavy stuff like watering cans, shopping, bedding etc

etc...gardening is OUT as is cooking...oh DEARY, DEARY ME!

Yep those darn

Gremlins..in Oz we have a great device for swatting flys...I reckon

I'll have to work on a 'Organic Gremlin Swatter'.

As far as treatment

options go it's really vital to know the range of CTD's involved 'cos

the drugs used for each type can be contra-indicated. I'm glad I

haven't given in to previous pressure to 'Trial' Prednisone ',cos

apparently, it's one such drug that's not a good idea with Systemic

Scleroderma because of possible renal failure.

If a person has

'Overlap' Syndrome then obviuosly drug treatment becomes quite

complex...which bit gets priority?

At least there are a

couple of Clinics where there are Teams of Specialists looking at

Cardio/Pulmonary/CTD combined Disease profiles. reckon I'll be

heading to one of those. Brisbane, Sydney, Melbourne.....

I also want to find a

top notch Hearing Aid Provider to see if the latest digital technology

can help restore some of my appreciation of Music. Unfortunately low

frequency SNHL is very rare & therefore there's not financial

incentive to research & develop these sorts of hearing aids.

Why do I keep getting

THAT word thrown at me....RARE!

It's beginning to sound

like a cop-out...go away we can't help you it's too RARE!

I've always wondered

whether you'd develop more CTD symptoms yourself because of your

Raynauds......

lots love to you

Sista.- Lady Lioness of Zioness..

> >

> >

> > Hiya Air Family...old & new...I've been reading my eye

sockets inside

> > out keeping up with y'all! Some of you are doing it pretty

tough right

> > now. I do empathise & heartily hope that each of you gets

on an UP

> > drift SOON!

> >

> > Just for any newbies...belated welcome...I'm An Aussie

member on the

> > Forum & really appreciate how much I've learnt from

everyone here. I

> > can see that you've already well n' truly jumped into various

threads

> > & are starting many new ones. Funny how the

Prednisone/Vats/O2

> > subjects are high on everyone's agenda....NOT!

> >

> > I am developing an even stronger interest in the subject of

the

> > relationship between the various known Autoimmune/Connective

Tissue

> > Diseases & PF. I for one am a "Work in Progress" as far

as a

> > definitive diagnosis goes. There are ever increasing signs

that my PF

> > does have an Autoimmune/CTD basis...the big ? is which one or

is it a

> > case of Overlap Syndrome.

> >

> > Right now I'm on a quest to get a handle on how these things

get

> > diagnosed & to nut out where I'll find the most expertise

in guiding

> > how I respond to the increasing body dramas that are

besetting me.

> >

> > I reckon I've got a pair of untrustworthy malevolent GREMLINS

up to No

> > Good, resident in my Person! They've decided they're bored

creating

> > havoc in my Lungs & even starting me on the Raynaud's

path hasn't

> > satisfied them one bit!

> >

> > After many months of hoping my left ear would magically stop

driving

> > me nutty with sound distortion, tinnitus (sea shell ocean

sound,,,ALL

> > the time) , hearing loss, aural fullness sensation, balance

problems

> > etc etc I FINALLY got in to see an ENT specialist who after

full

> > audiology tests has announced I have " Inner Ear, Sudden

Onset,

> > Unilateral, Low Frequency, Irreversible, Sensorineural

Hearing Loss".

> >

> > Basically that means I can't enjoy my precious Music as

before 'cos

> > the Stereo Effect is wrecked & distorted really

badly...some sounds

> > get STUCK & echo around inside my head like crazy.

Understanding

> > Conversation with background noise is also a big bumma but I

can

> > handle that OK...it's the loss of quality sound for my Music

that is

> > MUCH more depressing for me than even the Lung situation.

> >

> > Anyways the ENT guy is REALLY suss that it's Autoimmune

related but

> > sent me off for a MRI to discount the awful possibility that

it might

> > be an Acoustic Nerve Neuroma......the MRI happily

discounted THAT to

> > my relief, BUT it has shown up some areas of damage in my sub

cortex

> > compatible with " White Matter Ischaemia or Secondary

Demyelination

> > due to a number of possible causes".

> >

> > Three Guesses as to what is included on THAT list (MS,

SLE/Lupus,

> > Systemic Scleroderma, Sjoren's as well as just plain old

Dementia,

> > Cardio Vascular Disease etc)....next stop a Neurologist who

will check

> > on how DEMENTED I am already...well HECK everyone that's been

on this

> > Forum a while already knows the answer to THAT...my

Scilliness has

> > apparent from the start...

> >

> > But those darn Gremlins have been mucking about in my Bladder

as

> > well....anyone heard of 'Interstitial Cystitis'...my

Gyne man

> > investigated the inside of my bladder when he was doing my

gyne

> > surgery...he said it looked distinctly 'WRONG' on the lining

but not

> > quite like anything he's seen before...so THAT will get

followed up

> > with a UROLOGIST.....

> >

> > See that's IT about these darn Connective Tissue Disorders...they

> > ATTACK indiscriminately ANYWHERE there's Connective

Tissue...well

> > that's a great BIG playing Field for GREMLINS hey!

> >

> > What the Gremlins are really skilled at is covering their

> > tracks..."hey'', they mutter, "don't let her Titers get

too high or

> > they'll find out about us through the Autoantibody Blood

tests they do

> > on her annually.. & lets jump about all over her body so

she just

> > thinks she's imagining all this stuff..her GP will start

thinking

> > she's a Full Blown Hypochondriac & that gives us MORE

time to have

> > FUN...Wheeeeeeeeeeee!''

> >

> > So, as yet I remain undiagnosed with anything specific but

there are

> > so many Red Flags waving that those Gremlins better watch out

We're

> > onto 'em!

> >

> >

> >

> > /*/ in Oz /*/*/

> > // ///**/

> > //IPF: Fibrotic NSIP/UIP ??//

> > //Reynauds' //

> > //May 2007///*

> >

> >

> >

> >

>

[Guest guest]

Ooooooh CONGRATS on the news of another Grandbubby Sista...how lovely for you all!

I dubbed 2009 my 'Year of Maintenance' while everything was stable on my lung front. My wrists were long overdue for action & I heard my Gynae was retiring soon so it seemed like a good idea. BUT now all this other stuff has been triggered it's all been a bit of a wild ride!

How interesting that your Raynauds has been reassessed...none of my bloodwork has shown up anything specific as yet but that don't mean nuthin' according to my ENT man (who is married to a Dheumatologist!) Ah well I do have a +Ro52 factor showing but that's linked to All the Autoimmune conditions so no help in narrowing the diagnosis.

Lotsa love,

> > > >> > > >> > > > Hiya Air Family...old & new...I've been reading my eye sockets inside> > > > out keeping up with y'all! Some of you are doing it pretty tough > > right> > > > now. I do empathise & heartily hope that each of you gets on an UP> > > > drift SOON!> > > >> > > > Just for any newbies...belated welcome...I'm An Aussie member on the> > > > Forum & really appreciate how much I've learnt from everyone here. I> > > > can see that you've already well n' truly jumped into various threads> > > > & are starting many new ones. Funny how the Prednisone/Vats/O2> > > > subjects are high on everyone's agenda....NOT!> > > >> > > > I am developing an even stronger interest in the subject of the> > > > relationship between the various known Autoimmune/Connective Tissue> > > > Diseases & PF. I for one am a "Work in Progress" as far as a> > > > definitive diagnosis goes. There are ever increasing signs that my PF> > > > does have an Autoimmune/CTD basis...the big ? is which one or is it a> > > > case of Overlap Syndrome.> > > >> > > > Right now I'm on a quest to get a handle on how these things get> > > > diagnosed & to nut out where I'll find the most expertise in guiding> > > > how I respond to the increasing body dramas that are besetting me.> > > >> > > > I reckon I've got a pair of untrustworthy malevolent GREMLINS up > > to No> > > > Good, resident in my Person! They've decided they're bored creating> > > > havoc in my Lungs & even starting me on the Raynaud's path hasn't> > > > satisfied them one bit!> > > >> > > > After many months of hoping my left ear would magically stop driving> > > > me nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL> > > > the time) , hearing loss, aural fullness sensation, balance problems> > > > etc etc I FINALLY got in to see an ENT specialist who after full> > > > audiology tests has announced I have " Inner Ear, Sudden Onset,> > > > Unilateral, Low Frequency, Irreversible, Sensorineural Hearing Loss".> > > >> > > > Basically that means I can't enjoy my precious Music as before 'cos> > > > the Stereo Effect is wrecked & distorted really badly...some sounds> > > > get STUCK & echo around inside my head like crazy. Understanding> > > > Conversation with background noise is also a big bumma but I can> > > > handle that OK...it's the loss of quality sound for my Music that is> > > > MUCH more depressing for me than even the Lung situation.> > > >> > > > Anyways the ENT guy is REALLY suss that it's Autoimmune related but> > > > sent me off for a MRI to discount the awful possibility that it might> > > > be an Acoustic Nerve Neuroma......the MRI happily discounted THAT to> > > > my relief, BUT it has shown up some areas of damage in my sub cortex> > > > compatible with " White Matter Ischaemia or Secondary Demyelination> > > > due to a number of possible causes".> > > >> > > > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,> > > > Systemic Scleroderma, Sjoren's as well as just plain old Dementia,> > > > Cardio Vascular Disease etc)....next stop a Neurologist who will > > check> > > > on how DEMENTED I am already...well HECK everyone that's been on this> > > > Forum a while already knows the answer to THAT...my Scilliness has> > > > apparent from the start...> > > >> > > > But those darn Gremlins have been mucking about in my Bladder as> > > > well....anyone heard of 'Interstitial Cystitis'...my Gyne man> > > > investigated the inside of my bladder when he was doing my gyne> > > > surgery...he said it looked distinctly 'WRONG' on the lining but not> > > > quite like anything he's seen before...so THAT will get followed up> > > > with a UROLOGIST.....> > > >> > > > See that's IT about these darn Connective Tissue Disorders...they> > > > ATTACK indiscriminately ANYWHERE there's Connective Tissue...well> > > > that's a great BIG playing Field for GREMLINS hey!> > > >> > > > What the Gremlins are really skilled at is covering their> > > > tracks..."hey'', they mutter, "don't let her Titers get too high or> > > > they'll find out about us through the Autoantibody Blood tests > > they do> > > > on her annually.. & lets jump about all over her body so she just> > > > thinks she's imagining all this stuff..her GP will start thinking> > > > she's a Full Blown Hypochondriac & that gives us MORE time to have> > > > FUN...Wheeeeeeeeeeee!''> > > >> > > > So, as yet I remain undiagnosed with anything specific but there are> > > > so many Red Flags waving that those Gremlins better watch out We're> > > > onto 'em!> > > >> > > >> > > >> > > > /*/ in Oz /*/*/> > > > // ///**/> > > > //IPF: Fibrotic NSIP/UIP ??//> > > > //Reynauds' //> > > > //May 2007///*> > > >> > > >> > > >> > > >> > >> >> >>

[Guest guest]

Hi PJ...the meds are easy...I don't take any!

As for the test results I wack 'em onto a memory stick & then they're always onhand if another Doc needs to read anything.

I've gone from being somone who hadn't been inside my GP's office for so long that they hadn't computerised my old files to someone that seems to have a Calendar full of dates with new medical 'friends'...at least I'm getting up to Brisbane to catch more Art Exhibitions these days!

Cheers,

in Oz (GIO)

IPF: Fibrotic NSIP/UIP ????

May 2007

Raynaud's Phenomenon

May 2007

Ro52 Antibody +

May 2008

SSHL

July 2009

>> Hi ,> I've been reading the posts for about four months. Wow, you must have a notebook to keep track of all those doctors, tests, meds, etc. I know I do. It's the only way to keep track of doctors, tests, results, etc.> > This all can be an enhausting process, can't it?> > Despite it all you seem to be handling it well. What else can we do!> > Hope you find an anwser and that the gremlins calm themselves and find something else to do besides pick on you.> > PJ in Ohio, 54, IPF '09, Sjogren's '95> > Coooooeeeeeeeeeeeeeeeee> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hiya Air> > Family…old & new…I’ve been reading my eye sockets inside> > out keeping up with y’all! Some of you are doing it pretty tough right> > now. I do empathise & heartily hope that each of you gets on an UP drift> > SOON!> > > > > Just for any> > newbies…belated welcome…I’m An Aussie member on the Forum> > & really appreciate how much I’ve learnt from everyone here. I can> > see that you’ve already well n’ truly jumped into various threads> > & are starting many new ones. Funny how the Prednisone/Vats/O2 subjects are> > high on everyone’s agenda….NOT!> > > > > I am> > developing an even stronger interest in the subject of the relationship between> > the various known Autoimmune/Connective Tissue Diseases & PF. I for one am> > a “Work in Progress†as far as a definitive diagnosis goes. There> > are ever increasing signs that my PF does have an Autoimmune/CTD basis…the> > big ? is which one or is it a case of Overlap Syndrome. > > > > > Right now I’m> > on a quest to get a handle on how these things get diagnosed & to nut out> > where I’ll find the most expertise in guiding how I respond to the> > increasing body dramas that are besetting me. > > > > > I reckon I’ve> > got a pair of untrustworthy malevolent GREMLINS up to No Good, resident in my> > Person! They’ve decided they’re bored creating havoc in my Lungs> > & even starting me on the Raynaud’s path hasn’t satisfied them> > one bit!> > > > > After many> > months of hoping my left ear would magically stop driving me nutty with sound> > distortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing loss, aural> > fullness sensation, balance problems etc etc I FINALLY got in to see an ENT> > specialist who after full audiology tests has announced I have “ Inner> > Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural Hearing> > Lossâ€.> > > > > Basically that> > means I can’t enjoy my precious Music as before ‘cos the Stereo> > Effect is wrecked & distorted really badly…some sounds get STUCK> > & echo around inside my head like crazy. Understanding Conversation with> > background noise is also a big bumma but I can handle that OK…it’s> > the loss of quality sound for my Music that is MUCH more depressing for me than> > even the Lung situation. > > > > > Anyways the> > ENT guy is REALLY suss that it’s Autoimmune related but sent me off for a> > MRI to discount the awful possibility that it might be an Acoustic Nerve> > Neuroma……the MRI happily discounted THAT to my relief, BUT it has> > shown up some areas of damage in my sub cortex compatible with †White> > Matter Ischaemia or Secondary Demyelination due to a number of possible causesâ€.> > > > > Three Guesses> > as to what is included on THAT list (MS, SLE/Lupus, Systemic Scleroderma,> > Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease etc)….next> > stop a Neurologist who will check on how DEMENTED I am already…well HECK> > everyone that’s been on this Forum a while already knows the answer to> > THAT…my Scilliness has apparent from the start…> > > > > But those darn> > Gremlins have been mucking about in my Bladder as well….anyone heard of ‘Interstitial> > Cystitis’…my Gyne man investigated the inside of my bladder when he> > was doing my gyne surgery…he said it looked distinctly ‘WRONG’> > on the lining but not quite like anything he’s seen before…so THAT> > will get followed up with a UROLOGIST…..> > > > > See that’s> > IT about these darn Connective Tissue Disorders…they ATTACK indiscriminately> > ANYWHERE there’s Connective Tissue…well that’s a great> > BIG playing Field for GREMLINS hey!> > > > > What the Gremlins> > are really skilled at is covering their tracks…â€hey’’,> > they mutter, â€don’t let her Titers get too high or they’ll> > find out about us through the Autoantibody Blood tests they do on her annually.. & > > lets jump about all over her body so she just thinks she’s imagining all> > this stuff..her GP will start thinking she’s a Full Blown Hypochondriac> > & that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’ > > > > > So, as yet I> > remain undiagnosed with anything specific but there are so many Red Flags> > waving that those Gremlins better watch out We’re onto ‘em!> > > > > > > > > > > > > > > > > > > > in> > Oz > > > > > > > > IPF:> > Fibrotic NSIP/UIP ??> > > Reynauds' > > > > > May> > 2007>

[Guest guest]

OMG...... BWBB..... am I THAT obvious!

SGIO

> >> >> >> > Hiya Air Family.old & new.I've been reading my eye sockets inside out> > keeping up with y'all! Some of you are doing it pretty tough right> now. I do> > empathise & heartily hope that each of you gets on an UP drift SOON!> >> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum> & > > really appreciate how much I've learnt from everyone here. I can see> that> > you've already well n' truly jumped into various threads & are> starting many> > new ones. Funny how the Prednisone/Vats/O2 subjects are high on> everyone's> > agenda..NOT!> >> > I am developing an even stronger interest in the subject of the> relationship> > between the various known Autoimmune/Connective Tissue Diseases & PF.> I for> > one am a "Work in Progress" as far as a definitive diagnosis goes.> There are> > ever increasing signs that my PF does have an Autoimmune/CTD basis.the> big ?> > is which one or is it a case of Overlap Syndrome.> >> > Right now I'm on a quest to get a handle on how these things get> diagnosed & > > to nut out where I'll find the most expertise in guiding how I respond> to> > the increasing body dramas that are besetting me.> >> > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No> Good,> > resident in my Person! They've decided they're bored creating havoc in> my> > Lungs & even starting me on the Raynaud's path hasn't satisfied them> one> > bit!> >> > After many months of hoping my left ear would magically stop driving> me> > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the> time)> > , hearing loss, aural fullness sensation, balance problems etc etc I> FINALLY> > got in to see an ENT specialist who after full audiology tests has> announced> > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,> Irreversible,> > Sensorineural Hearing Loss".> >> > Basically that means I can't enjoy my precious Music as before 'cos> the> > Stereo Effect is wrecked & distorted really badly.some sounds get> STUCK & > > echo around inside my head like crazy. Understanding Conversation with> > background noise is also a big bumma but I can handle that OK.it's the> loss> > of quality sound for my Music that is MUCH more depressing for me than> even> > the Lung situation.> >> > Anyways the ENT guy is REALLY suss that it's Autoimmune related but> sent me> > off for a MRI to discount the awful possibility that it might be an> Acoustic> > Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it> has> > shown up some areas of damage in my sub cortex compatible with " White> > Matter Ischaemia or Secondary Demyelination due to a number of> possible> > causes".> >> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,> Systemic> > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio> Vascular> > Disease etc)..next stop a Neurologist who will check on how DEMENTED I> am> > already.well HECK everyone that's been on this Forum a while already> knows> > the answer to THAT.my Scilliness has apparent from the start.> >> > But those darn Gremlins have been mucking about in my Bladder as> > well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated> the> > inside of my bladder when he was doing my gyne surgery.he said it> looked> > distinctly 'WRONG' on the lining but not quite like anything he's seen> > before.so THAT will get followed up with a UROLOGIST...> >> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> > indiscriminately ANYWHERE there's Connective Tissue.well that's a> great BIG> > playing Field for GREMLINS hey!> >> > What the Gremlins are really skilled at is covering their> tracks."hey'',> > they mutter, "don't let her Titers get too high or they'll find out> about us> > through the Autoantibody Blood tests they do on her annually.. & lets> jump> > about all over her body so she just thinks she's imagining all this> > stuff..her GP will start thinking she's a Full Blown Hypochondriac & > that> > gives us MORE time to have FUN.Wheeeeeeeeeeee!''> >> > So, as yet I remain undiagnosed with anything specific but there are> so many> > Red Flags waving that those Gremlins better watch out We're onto 'em!> >> >> >> > in Oz> >> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'> > May 2007> >>

[Guest guest]

Thanks for your kind words Beth...it IS nice to be missed!

I have to say that the surgeries pae ointo insignificance alongside these new developments..Pain is just that DUMB awful PAIN but my hearing & neuro involvement are something else again.

Much , MUCH harder to cope with...for the first time since my initial diagnosis in 2007 I've fallen into a Reactive Depression...... of ALL the areas of my body for the Gremlins to stuff about with...well they've chosen the 2 most most precious to me!

What else can I say....I've got some MAJOR adjustments to make in my headspace...I Will NOT fall victim to the Black Dog as well!

love you heaps Beth....you do us proud!

>> GINA!!!!!!> So glad to have you back and posting again. I've been thinking of you lately. Done with the surgeries for now? Recovery mode for awhile...hopefully a break for you. > > You may have read but I'll say it again the doctors that I see at Duke have said that true IPF, that is pulmonary fibrosis witha truly unknown cause is extremely rare in those under the 55-60 age range, especially women. That pulmonary fibrosis in people like us is almost always associated with a auto-immune/connective tissue disease. That's what made my doctor so aggressive in trying to figure out what was going on with me. Like you I had at best ambiguous blood work for a long time, but finally got some answers with the myositis panel and then the muscle biopsy.> > I know you well enough to know that you will get your answers and make decisions that are best for you. I do hope that there is something they can do for you so that you can enjoy your music again....that's truly depressing. It's a full time job keeping the gremlins at bay isn't it?> > So happy you are back with us! You have been missed!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support ; pulmonaryfibrosis > Sent: Thursday, August 20, 2009 12:04:10 AM> Subject: Coooooeeeeeeeeeeeeeeeee> >  > > Hiya Air Family…old & new…I’ve been reading my eye sockets inside out keeping up with y’all! Some of you are doing it pretty tough right now. I do empathise & heartily hope that each of you gets on an UP drift SOON!> Just for any newbies…belated welcome…I’m An Aussie member on the Forum & really appreciate how much I’ve learnt from everyone here. I can see that you’ve already well n’ truly jumped into various threads & are starting many new ones. Funny how the Prednisone/Vats/ O2 subjects are high on everyone’s agenda….NOT!> I am developing an even stronger interest in the subject of the relationship between the various known Autoimmune/Connecti ve Tissue Diseases & PF. I for one am a “Work in Progress†as far as a definitive diagnosis goes. There are ever increasing signs that my PF does have an Autoimmune/CTD basis…the big ? is which one or is it a case of Overlap Syndrome. > Right now I’m on a quest to get a handle on how these things get diagnosed & to nut out where I’ll find the most expertise in guiding how I respond to the increasing body dramas that are besetting me. > I reckon I’ve got a pair of untrustworthy malevolent GREMLINS up to No Good, resident in my Person! They’ve decided they’re bored creating havoc in my Lungs & even starting me on the Raynaud’s path hasn’t satisfied them one bit!> After many months of hoping my left ear would magically stop driving me nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing loss, aural fullness sensation, balance problems etc etc I FINALLY got in to see an ENT specialist who after full audiology tests has announced I have “ Inner Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural Hearing Lossâ€.> Basically that means I can’t enjoy my precious Music as before ‘cos the Stereo Effect is wrecked & distorted really badly…some sounds get STUCK & echo around inside my head like crazy. Understanding Conversation with background noise is also a big bumma but I can handle that OK…it’s the loss of quality sound for my Music that is MUCH more depressing for me than even the Lung situation. > Anyways the ENT guy is REALLY suss that it’s Autoimmune related but sent me off for a MRI to discount the awful possibility that it might be an Acoustic Nerve Neuroma……the MRI happily discounted THAT to my relief, BUT it has shown up some areas of damage in my sub cortex compatible with †White Matter Ischaemia or Secondary Demyelination due to a number of possible causesâ€.> Three Guesses as to what is included on THAT list (MS, SLE/Lupus, Systemic Scleroderma, Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease etc)….next stop a Neurologist who will check on how DEMENTED I am already…well HECK everyone that’s been on this Forum a while already knows the answer to THAT…my Scilliness has apparent from the start…> But those darn Gremlins have been mucking about in my Bladder as well….anyone heard of ‘Interstitial Cystitis’…my Gyne man investigated the inside of my bladder when he was doing my gyne surgery…he said it looked distinctly ‘WRONG’ on the lining but not quite like anything he’s seen before…so THAT will get followed up with a UROLOGIST…..> See that’s IT about these darn Connective Tissue Disorders…they ATTACK indiscriminately ANYWHERE there’s  Connective Tissue…well that’s a great BIG playing Field for GREMLINS hey!> What the Gremlins are really skilled at is covering their tracks…â€hey’’, they mutter, â€don’t let her Titers get too high or they’ll find out about us through the Autoantibody Blood tests they do on her annually.. & lets jump about all over her body so she just thinks she’s imagining all this stuff..her GP will start thinking she’s a Full Blown Hypochondriac & that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’ > So, as yet I remain undiagnosed with anything specific but there are so many Red Flags waving that those Gremlins better watch out We’re onto ‘em!>  > in Oz                  >  > IPF: Fibrotic NSIP/UIP ??> Reynauds'                 > May 2007 >  >

[Guest guest]

Mazel Tov

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: CoooooeeeeeeeeeeeeeeeeeTo: Breathe-Support Date: Thursday, August 20, 2009, 2:49 PM

, My pulmodude has finally said that I probably do not have "real reynauds"Just poor circulation. ..due to the negative results of the A/I bloodwork. So, you are the first to see my latest updateon the signature... I've erased the reference to the Reynauds.You are really brave to be undergoing so much surgery in such a short period of time...both wrists and the "lady"stuff too!!!So much anesthesia in a short time too. Be careful...let everyone else do everything!! ! You'd better be good!We have great news...Our son Adam and daughter -in- law Ilana are expecting again!!!!Darah will have a new brother or sister in March!!! New baby on the way!!

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

grangi49 wrote:

Hiya Sista....are you keeping the Midnight Oil burning as well as Dyane!

Funny you should ask about my 'slit wrists'..... .just home last night from having the right one done.....I'm very proud that i'm able to type with my lazy, under-practised, left hand.

It seems so far that this second job will go a lot smoother...no overblown fat cheerio fingers this time...Yet!) I've deliberately had this last one done while still in recovery mode from my recent gyne surgery....having my right hand out of action will force me to keep taking things easy & NOT start lifting heavy stuff like watering cans, shopping, bedding etc etc...gardening is OUT as is cooking...oh DEARY, DEARY ME!

Yep those darn Gremlins..in Oz we have a great device for swatting flys...I reckon I'll have to work on a 'Organic Gremlin Swatter'.

As far as treatment options go it's really vital to know the range of CTD's involved 'cos the drugs used for each type can be contra-indicated. I'm glad I haven't given in to previous pressure to 'Trial' Prednisone ',cos apparently, it's one such drug that's not a good idea with Systemic Scleroderma because of possible renal failure.

If a person has 'Overlap' Syndrome then obviuosly drug treatment becomes quite complex...which bit gets priority?

At least there are a couple of Clinics where there are Teams of Specialists looking at Cardio/Pulmonary/ CTD combined Disease profiles. reckon I'll be heading to one of those. Brisbane, Sydney, Melbourne... ..

I also want to find a top notch Hearing Aid Provider to see if the latest digital technology can help restore some of my appreciation of Music. Unfortunately low frequency SNHL is very rare & therefore there's not financial incentive to research & develop these sorts of hearing aids.

Why do I keep getting THAT word thrown at me....RARE!

It's beginning to sound like a cop-out...go away we can't help you it's too RARE!

I've always wondered whether you'd develop more CTD symptoms yourself because of your Raynauds.... ..

lots love to you Sista.- Lady Lioness of Zioness..

> > > >> > Hiya Air Family...old & new...I've been reading my eye sockets inside > > out keeping up with y'all! Some of you are doing it pretty tough right > > now. I do empathise & heartily hope that each of you gets on an UP > > drift SOON!> >> > Just for any newbies...belated welcome...I' m An Aussie member on the > > Forum & really appreciate how much I've learnt from everyone here. I > > can see that you've already well n' truly jumped into various threads > > & are starting many new ones. Funny how the Prednisone/Vats/ O2 > > subjects are high on everyone's

agenda....NOT!> >> > I am developing an even stronger interest in the subject of the > > relationship between the various known Autoimmune/Connecti ve Tissue > > Diseases & PF. I for one am a "Work in Progress" as far as a > > definitive diagnosis goes. There are ever increasing signs that my PF > > does have an Autoimmune/CTD basis...the big ? is which one or is it a > > case of Overlap Syndrome.> >> > Right now I'm on a quest to get a handle on how these things get > > diagnosed & to nut out where I'll find the most expertise in guiding > > how I respond to the increasing body dramas that are besetting me.> >> > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No > > Good, resident in my Person! They've decided they're bored creating > > havoc in my Lungs & even starting me

on the Raynaud's path hasn't > > satisfied them one bit!> >> > After many months of hoping my left ear would magically stop driving > > me nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL > > the time) , hearing loss, aural fullness sensation, balance problems > > etc etc I FINALLY got in to see an ENT specialist who after full > > audiology tests has announced I have " Inner Ear, Sudden Onset, > > Unilateral, Low Frequency, Irreversible, Sensorineural Hearing Loss".> >> > Basically that means I can't enjoy my precious Music as before 'cos > > the Stereo Effect is wrecked & distorted really badly...some sounds > > get STUCK & echo around inside my head like crazy. Understanding > > Conversation with background noise is also a big bumma but I can > > handle that OK...it's the loss of quality

sound for my Music that is > > MUCH more depressing for me than even the Lung situation.> >> > Anyways the ENT guy is REALLY suss that it's Autoimmune related but > > sent me off for a MRI to discount the awful possibility that it might > > be an Acoustic Nerve Neuroma..... .the MRI happily discounted THAT to > > my relief, BUT it has shown up some areas of damage in my sub cortex > > compatible with " White Matter Ischaemia or Secondary Demyelination > > due to a number of possible causes".> >> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus, > > Systemic Scleroderma, Sjoren's as well as just plain old Dementia, > > Cardio Vascular Disease etc)....next stop a Neurologist who will check > > on how DEMENTED I am already...well HECK everyone that's been on this > > Forum a while already knows the

answer to THAT...my Scilliness has > > apparent from the start...> >> > But those darn Gremlins have been mucking about in my Bladder as > > well....anyone heard of 'Interstitial Cystitis'... my Gyne man > > investigated the inside of my bladder when he was doing my gyne > > surgery...he said it looked distinctly 'WRONG' on the lining but not > > quite like anything he's seen before...so THAT will get followed up > > with a UROLOGIST... ..> >> > See that's IT about these darn Connective Tissue Disorders... they > > ATTACK indiscriminately ANYWHERE there's Connective Tissue...well > > that's a great BIG playing Field for GREMLINS hey!> >> > What the Gremlins are really skilled at is covering their > > tracks..."hey' ', they mutter, "don't let her Titers get too high or > > they'll find out about

us through the Autoantibody Blood tests they do > > on her annually.. & lets jump about all over her body so she just > > thinks she's imagining all this stuff..her GP will start thinking > > she's a Full Blown Hypochondriac & that gives us MORE time to have > > FUN...Wheeeeeeeeeee e!''> >> > So, as yet I remain undiagnosed with anything specific but there are > > so many Red Flags waving that those Gremlins better watch out We're > > onto 'em!> >> > > >> > /*/ in Oz /*/*/> > // ///**/> > //IPF: Fibrotic NSIP/UIP ??//> > //Reynauds' //> > //May 2007///* > >> > > >> >>__________________________________________________

[Guest guest]

Oh my dear sweet friend, I think you have been through ENOUGH... I wish I were there to give you a big ol' hug. Just think it HAS to STOP soon.. Thats what I use to say. I had everything and every part of this body poked and cut into pieces.I really didn't dream I would ever get a fatal disease after having so many surgeries. Anyhow please know I love ya sista, and dopray for you. Take care.. I really hate the part about your hearing. i have lost a bit because my TV is getting louder and TT alwayssays "you and Dad are going deaf, that TV is toooo loud.. Oh well that is what the volume button is for. Catch ya on skype again soon. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Thanks for your kind words Beth...it IS nice to be missed!I have to say that the surgeries pae ointo insignificance alongside these new developments..Pain is just that DUMB awful PAIN but my hearing & neuro involvement are something else again.Much , MUCH harder to cope with...for the first time since my initial diagnosis in 2007 I've fallen into a Reactive Depression...... of ALL the areas of my body for the Gremlins to stuff about with...well they've chosen the 2 most most precious to me!What else can I say....I've got some MAJOR adjustments to make in my headspace...I Will NOT fall victim to the Black Dog as well!love you heaps Beth....you do us proud!>> GINA!!!!!!> So glad to have you back and posting again. I've been thinking of you lately. Done with the surgeries for now? Recovery mode for awhile...hopefully a break for you. > > You may have read but I'll say it again the doctors that I see at Duke have said that true IPF, that is pulmonary fibrosis witha truly unknown cause is extremely rare in those under the 55-60 age range, especially women. That pulmonary fibrosis in people like us is almost always associated with a auto-immune/connective tissue disease. That's what made my doctor so aggressive in trying to figure out what was going on with me. Like you I had at best ambiguous blood work for a long time, but finally got some answers with the myositis panel and then the muscle biopsy.> > I know you well enough to know that you will get your answers and make decisions that are best for you. I do hope that there is something they can do for you so that you can enjoy your music again....that's truly depressing. It's a full time job keeping the gremlins at bay isn't it?> > So happy you are back with us! You have been missed!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support ; pulmonaryfibrosis > Sent: Thursday, August 20, 2009 12:04:10 AM> Subject: Coooooeeeeeeeeeeeeeeeee> >  > > Hiya Air Family…old & new…I’ve been reading my eye sockets inside out keeping up with y’all! Some of you are doing it pretty tough right now. I do empathise & heartily hope that each of you gets on an UP drift SOON!> Just for any newbies…belated welcome…I’m An Aussie member on the Forum & really appreciate how much I’ve learnt from everyone here. I can see that you’ve already well n’ truly jumped into various threads & are starting many new ones. Funny how the Prednisone/Vats/ O2 subjects are high on everyone’s agenda….NOT!> I am developing an even stronger interest in the subject of the relationship between the various known Autoimmune/Connecti ve Tissue Diseases & PF. I for one am a “Work in Progress†as far as a definitive diagnosis goes. There are ever increasing signs that my PF does have an Autoimmune/CTD basis…the big ? is which one or is it a case of Overlap Syndrome. > Right now I’m on a quest to get a handle on how these things get diagnosed & to nut out where I’ll find the most expertise in guiding how I respond to the increasing body dramas that are besetting me. > I reckon I’ve got a pair of untrustworthy malevolent GREMLINS up to No Good, resident in my Person! They’ve decided they’re bored creating havoc in my Lungs & even starting me on the Raynaud’s path hasn’t satisfied them one bit!> After many months of hoping my left ear would magically stop driving me nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the time) , hearing loss, aural fullness sensation, balance problems etc etc I FINALLY got in to see an ENT specialist who after full audiology tests has announced I have “ Inner Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural Hearing Lossâ€Â.> Basically that means I can’t enjoy my precious Music as before ‘cos the Stereo Effect is wrecked & distorted really badly…some sounds get STUCK & echo around inside my head like crazy. Understanding Conversation with background noise is also a big bumma but I can handle that OK…it’s the loss of quality sound for my Music that is MUCH more depressing for me than even the Lung situation. > Anyways the ENT guy is REALLY suss that it’s Autoimmune related but sent me off for a MRI to discount the awful possibility that it might be an Acoustic Nerve Neuroma……the MRI happily discounted THAT to my relief, BUT it has shown up some areas of damage in my sub cortex compatible with †White Matter Ischaemia or Secondary Demyelination due to a number of possible causesâ€Â.> Three Guesses as to what is included on THAT list (MS, SLE/Lupus, Systemic Scleroderma, Sjoren’s as well as just plain old Dementia, Cardio Vascular Disease etc)….next stop a Neurologist who will check on how DEMENTED I am already…well HECK everyone that’s been on this Forum a while already knows the answer to THAT…my Scilliness has apparent from the start…> But those darn Gremlins have been mucking about in my Bladder as well….anyone heard of ‘Interstitial Cystitis’…my Gyne man investigated the inside of my bladder when he was doing my gyne surgery…he said it looked distinctly ‘WRONG’ on the lining but not quite like anything he’s seen before…so THAT will get followed up with a UROLOGIST…..> See that’s IT about these darn Connective Tissue Disorders…they ATTACK indiscriminately ANYWHERE there’s  Connective Tissue…well that’s a great BIG playing Field for GREMLINS hey!> What the Gremlins are really skilled at is covering their tracks…â€Âhey’’, they mutter, â€Âdon’t let her Titers get too high or they’ll find out about us through the Autoantibody Blood tests they do on her annually.. & lets jump about all over her body so she just thinks she’s imagining all this stuff..her GP will start thinking she’s a Full Blown Hypochondriac & that gives us MORE time to have FUN…Wheeeeeeeeeeee!’’ > So, as yet I remain undiagnosed with anything specific but there are so many Red Flags waving that those Gremlins better watch out We’re onto ‘em!>  > in Oz                  >  > IPF: Fibrotic NSIP/UIP ??> Reynauds'                 > May 2007 >  >

[Guest guest]

GIO/SGIO

Yes, but thats what helps you through it all.

Sometimes I am tempted to say no more blood work ever, simply because

something new always pops up. I went through one period like you have

described that every doctor you saw made a referral to at least one

more. My rhematologist has made referrals or sent panic type messages so

far to at least 6 other doctors, one of them on three different

occasions for three different things (Oncologist for three different

forms of cancer in addition to the one form the oncologist was already

monitoring for). PH doctor rules out PH but meanwhile tests DNA again

and it shows positive which is another connective tissue disease

indicator (primarily Lupus).

I have to laugh at the hilarity sometimes of my medical records. I had a

neurologist I was referred to express shock that I wasn't in really bad

shape needing help just to get around the office. She said " you look

good " and told me not what she expected. Well, reality I feel good and

all the labs and everything else in the world can't change that.

Reality, you are just crazy enough that the insanity coming from those

who claim sanity will never get the best of you. It's like the doctor's

appointments enabling you to see more art. Well, summer doctor's

appointments make sure I get out of the house a lot even when its 105

degrees....lol

> > >

> > >

> > >

> > > Hiya Air Family.old & new.I've been reading my eye sockets inside

> out

> > > keeping up with y'all! Some of you are doing it pretty tough right

> > now. I do

> > > empathise & heartily hope that each of you gets on an UP drift

SOON!

> > >

> > > Just for any newbies.belated welcome.I'm An Aussie member on the

> Forum

> > &

> > > really appreciate how much I've learnt from everyone here. I can

see

> > that

> > > you've already well n' truly jumped into various threads & are

> > starting many

> > > new ones. Funny how the Prednisone/Vats/O2 subjects are high on

> > everyone's

> > > agenda..NOT!

> > >

> > > I am developing an even stronger interest in the subject of the

> > relationship

> > > between the various known Autoimmune/Connective Tissue Diseases &

> PF.

> > I for

> > > one am a " Work in Progress " as far as a definitive diagnosis goes.

> > There are

> > > ever increasing signs that my PF does have an Autoimmune/CTD

> basis.the

> > big ?

> > > is which one or is it a case of Overlap Syndrome.

> > >

> > > Right now I'm on a quest to get a handle on how these things get

> > diagnosed &

> > > to nut out where I'll find the most expertise in guiding how I

> respond

> > to

> > > the increasing body dramas that are besetting me.

> > >

> > > I reckon I've got a pair of untrustworthy malevolent GREMLINS up

to

> No

> > Good,

> > > resident in my Person! They've decided they're bored creating

havoc

> in

> > my

> > > Lungs & even starting me on the Raynaud's path hasn't satisfied

them

> > one

> > > bit!

> > >

> > > After many months of hoping my left ear would magically stop

driving

> > me

> > > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL

> the

> > time)

> > > , hearing loss, aural fullness sensation, balance problems etc etc

I

> > FINALLY

> > > got in to see an ENT specialist who after full audiology tests has

> > announced

> > > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,

> > Irreversible,

> > > Sensorineural Hearing Loss " .

> > >

> > > Basically that means I can't enjoy my precious Music as before

'cos

> > the

> > > Stereo Effect is wrecked & distorted really badly.some sounds get

> > STUCK &

> > > echo around inside my head like crazy. Understanding Conversation

> with

> > > background noise is also a big bumma but I can handle that OK.it's

> the

> > loss

> > > of quality sound for my Music that is MUCH more depressing for me

> than

> > even

> > > the Lung situation.

> > >

> > > Anyways the ENT guy is REALLY suss that it's Autoimmune related

but

> > sent me

> > > off for a MRI to discount the awful possibility that it might be

an

> > Acoustic

> > > Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT

it

> > has

> > > shown up some areas of damage in my sub cortex compatible with "

> White

> > > Matter Ischaemia or Secondary Demyelination due to a number of

> > possible

> > > causes " .

> > >

> > > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,

> > Systemic

> > > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio

> > Vascular

> > > Disease etc)..next stop a Neurologist who will check on how

DEMENTED

> I

> > am

> > > already.well HECK everyone that's been on this Forum a while

already

> > knows

> > > the answer to THAT.my Scilliness has apparent from the start.

> > >

> > > But those darn Gremlins have been mucking about in my Bladder as

> > > well..anyone heard of 'Interstitial Cystitis'.my Gyne man

> investigated

> > the

> > > inside of my bladder when he was doing my gyne surgery.he said it

> > looked

> > > distinctly 'WRONG' on the lining but not quite like anything he's

> seen

> > > before.so THAT will get followed up with a UROLOGIST...

> > >

> > > See that's IT about these darn Connective Tissue Disorders.they

> ATTACK

> > > indiscriminately ANYWHERE there's Connective Tissue.well that's a

> > great BIG

> > > playing Field for GREMLINS hey!

> > >

> > > What the Gremlins are really skilled at is covering their

> > tracks. " hey'',

> > > they mutter, " don't let her Titers get too high or they'll find

out

> > about us

> > > through the Autoantibody Blood tests they do on her annually.. &

lets

> > jump

> > > about all over her body so she just thinks she's imagining all

this

> > > stuff..her GP will start thinking she's a Full Blown Hypochondriac

&

> > that

> > > gives us MORE time to have FUN.Wheeeeeeeeeeee!''

> > >

> > > So, as yet I remain undiagnosed with anything specific but there

are

> > so many

> > > Red Flags waving that those Gremlins better watch out We're onto

> 'em!

> > >

> > >

> > >

> > > in Oz

> > >

> > > IPF: Fibrotic NSIP/UIP ??

> > > Reynauds'

> > > May 2007

> > >

> >

>

>

>

>

>

>

>

>

<http://www.smileycentral.com/dl/index.jhtml?partner=ZSzeb114_ZSYYYYYYYY\

\

> AU & utm_id=7922>

>

[Guest guest]

Hang in there, Bruce!! U r 1 tough cookie!! Carolyn WadeMissippi, COPD 2005, UIP January 2007, Fatty liver disease June 2009, Lupus (SLE) August 2009, July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Thursday, August 20, 2009 10:53:31 PMSubject: Re: Coooooeeeeeeeeeeeeeeeee

GIO/SGIOYes, but thats what helps you through it all.Sometimes I am tempted to say no more blood work ever, simply becausesomething new always pops up. I went through one period like you havedescribed that every doctor you saw made a referral to at least onemore. My rhematologist has made referrals or sent panic type messages sofar to at least 6 other doctors, one of them on three differentoccasions for three different things (Oncologist for three differentforms of cancer in addition to the one form the oncologist was alreadymonitoring for). PH doctor rules out PH but meanwhile tests DNA againand it shows positive which is another connective tissue diseaseindicator (primarily Lupus).I have to laugh at the hilarity sometimes of my medical records. I had aneurologist I was referred to express shock that I wasn't in really badshape needing help just to get around the office. She said

"you lookgood" and told me not what she expected. Well, reality I feel good andall the labs and everything else in the world can't change that.Reality, you are just crazy enough that the insanity coming from thosewho claim sanity will never get the best of you. It's like the doctor'sappointments enabling you to see more art. Well, summer doctor'sappointments make sure I get out of the house a lot even when its 105degrees....lol> > >> > >> > >> > >

Hiya Air Family.old & new.I've been reading my eye sockets inside> out> > > keeping up with y'all! Some of you are doing it pretty tough right> > now. I do> > > empathise & heartily hope that each of you gets on an UP driftSOON!> > >> > > Just for any newbies.belated welcome.I'm An Aussie member on the> Forum> > & > > > really appreciate how much I've learnt from everyone here. I cansee> > that> > > you've already well n' truly jumped into various threads & are> > starting many> > > new ones. Funny how the Prednisone/Vats/ O2 subjects are high on> > everyone's> > > agenda..NOT!> > >> > > I am developing an even stronger interest in the subject of the> > relationship> > > between the various known Autoimmune/Connecti

ve Tissue Diseases & > PF.> > I for> > > one am a "Work in Progress" as far as a definitive diagnosis goes.> > There are> > > ever increasing signs that my PF does have an Autoimmune/CTD> basis.the> > big ?> > > is which one or is it a case of Overlap Syndrome.> > >> > > Right now I'm on a quest to get a handle on how these things get> > diagnosed & > > > to nut out where I'll find the most expertise in guiding how I> respond> > to> > > the increasing body dramas that are besetting me.> > >> > > I reckon I've got a pair of untrustworthy malevolent GREMLINS upto> No> > Good,> > > resident in my Person! They've decided they're bored creatinghavoc> in> > my> > > Lungs & even starting me on the

Raynaud's path hasn't satisfiedthem> > one> > > bit!> > >> > > After many months of hoping my left ear would magically stopdriving> > me> > > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL> the> > time)> > > , hearing loss, aural fullness sensation, balance problems etc etcI> > FINALLY> > > got in to see an ENT specialist who after full audiology tests has> > announced> > > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,> > Irreversible,> > > Sensorineural Hearing Loss".> > >> > > Basically that means I can't enjoy my precious Music as before'cos> > the> > > Stereo Effect is wrecked & distorted really badly.some sounds get> > STUCK & > > > echo around inside

my head like crazy. Understanding Conversation> with> > > background noise is also a big bumma but I can handle that OK.it's> the> > loss> > > of quality sound for my Music that is MUCH more depressing for me> than> > even> > > the Lung situation.> > >> > > Anyways the ENT guy is REALLY suss that it's Autoimmune relatedbut> > sent me> > > off for a MRI to discount the awful possibility that it might bean> > Acoustic> > > Nerve Neuroma...the MRI happily discounted THAT to my relief, BUTit> > has> > > shown up some areas of damage in my sub cortex compatible with "> White> > > Matter Ischaemia or Secondary Demyelination due to a number of> > possible> > > causes".> > >> > > Three Guesses as to what is

included on THAT list (MS, SLE/Lupus,> > Systemic> > > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio> > Vascular> > > Disease etc)..next stop a Neurologist who will check on howDEMENTED> I> > am> > > already.well HECK everyone that's been on this Forum a whilealready> > knows> > > the answer to THAT.my Scilliness has apparent from the start.> > >> > > But those darn Gremlins have been mucking about in my Bladder as> > > well..anyone heard of 'Interstitial Cystitis'.my Gyne man> investigated> > the> > > inside of my bladder when he was doing my gyne surgery.he said it> > looked> > > distinctly 'WRONG' on the lining but not quite like anything he's> seen> > > before.so THAT will get followed up with a UROLOGIST...>

> >> > > See that's IT about these darn Connective Tissue Disorders.they> ATTACK> > > indiscriminately ANYWHERE there's Connective Tissue.well that's a> > great BIG> > > playing Field for GREMLINS hey!> > >> > > What the Gremlins are really skilled at is covering their> > tracks."hey' ',> > > they mutter, "don't let her Titers get too high or they'll findout> > about us> > > through the Autoantibody Blood tests they do on her annually.. & lets> > jump> > > about all over her body so she just thinks she's imagining allthis> > > stuff..her GP will start thinking she's a Full Blown Hypochondriac & > > that> > > gives us MORE time to have FUN.Wheeeeeeeeeeee! ''> > >> > > So, as yet I remain undiagnosed with anything

specific but thereare> > so many> > > Red Flags waving that those Gremlins better watch out We're onto> 'em!> > >> > >> > >> > > in Oz> > >> > > IPF: Fibrotic NSIP/UIP ??> > > Reynauds'> > > May 2007> > >> >>>>>>>>><http://www.smileyce ntral.com/ dl/index. jhtml?partner= ZSzeb114_ ZSYYYYYYYY\\> AU & utm_id=7922>>

[Guest guest]

Dearest HRH....your support means everything to me..you DO know how to 'walk the talk'.....your humour mixed with straight talk is such a vital part of this Forum..love you heaps n' HEAPS!

I'll get back to Skype when I've sorted a wee little fast download stick to use for those special occasions when I want to chat And see my princess hee hee....in the meantiime HUGS received 7 returned!

lotsa,

> >> > GINA!!!!!!> > So glad to have you back and posting again. I've been thinking of > you lately. Done with the surgeries for now? Recovery mode for > awhile...hopefully a break for you.> >> > You may have read but I'll say it again the doctors that I see at > Duke have said that true IPF, that is pulmonary fibrosis witha truly > unknown cause is extremely rare in those under the 55-60 age range, > especially women. That pulmonary fibrosis in people like us is > almost always associated with a auto-immune/connective tissue > disease. That's what made my doctor so aggressive in trying to figure > out what was going on with me. Like you I had at best ambiguous blood > work for a long time, but finally got some answers with the myositis > panel and then the muscle biopsy.> >> > I know you well enough to know that you will get your answers and > make decisions that are best for you. I do hope that there is > something they can do for you so that you can enjoy your music > again....that's truly depressing. It's a full time job keeping the > gremlins at bay isn't it?> >> > So happy you are back with us! You have been missed!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> > ________________________________> > From: Francis gina.francis@> > To: Breathe-Support ; > pulmonaryfibrosis > > Sent: Thursday, August 20, 2009 12:04:10 AM> > Subject: Coooooeeeeeeeeeeeeeeeee> >> > Â> >> > Hiya Air Family…old & new…I’ve been reading my > eye sockets inside out keeping up with y’all! Some of you are > doing it pretty tough right now. I do empathise & heartily hope that > each of you gets on an UP drift SOON!> > Just for any newbies…belated welcome…I’m An > Aussie member on the Forum & really appreciate how much I’ve > learnt from everyone here. I can see that you’ve already well > n’ truly jumped into various threads & are starting many new > ones. Funny how the Prednisone/Vats/ O2 subjects are high on > everyone’s agenda….NOT!> > I am developing an even stronger interest in the subject of the > relationship between the various known Autoimmune/Connecti ve Tissue > Diseases & PF. I for one am a â€Å"Work in Progress†as far as > a definitive diagnosis goes. There are ever increasing signs that my > PF does have an Autoimmune/CTD basis…the big ? is which one or > is it a case of Overlap Syndrome.> > Right now I’m on a quest to get a handle on how these things > get diagnosed & to nut out where I’ll find the most expertise > in guiding how I respond to the increasing body dramas that are > besetting me.> > I reckon I’ve got a pair of untrustworthy malevolent > GREMLINS up to No Good, resident in my Person! They’ve decided > they’re bored creating havoc in my Lungs & even starting me on > the Raynaud’s path hasn’t satisfied them one bit!> > After many months of hoping my left ear would magically stop > driving me nutty with sound distortion, tinnitus (sea shell ocean > sound,,,ALL the time) , hearing loss, aural fullness sensation, > balance problems etc etc I FINALLY got in to see an ENT specialist > who after full audiology tests has announced I have â€Å" Inner Ear, > Sudden Onset, Unilateral, Low Frequency, Irreversible, Sensorineural > Hearing Lossâ€Â.> > Basically that means I can’t enjoy my precious Music as > before ‘cos the Stereo Effect is wrecked & distorted really > badly…some sounds get STUCK & echo around inside my head like > crazy. Understanding Conversation with background noise is also a big > bumma but I can handle that OK…it’s the loss of quality > sound for my Music that is MUCH more depressing for me than even the > Lung situation.> > Anyways the ENT guy is REALLY suss that it’s Autoimmune > related but sent me off for a MRI to discount the awful possibility > that it might be an Acoustic Nerve Neuroma……the MRI > happily discounted THAT to my relief, BUT it has shown up some areas > of damage in my sub cortex compatible with †White Matter > Ischaemia or Secondary Demyelination due to a number of possible > causesâ€Â.> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus, > Systemic Scleroderma, Sjoren’s as well as just plain old > Dementia, Cardio Vascular Disease etc)….next stop a Neurologist > who will check on how DEMENTED I am already…well HECK everyone > that’s been on this Forum a while already knows the answer to > THAT…my Scilliness has apparent from the start…> > But those darn Gremlins have been mucking about in my Bladder as > well….anyone heard of ‘Interstitial Cystitis’â > €¦my Gyne man investigated the inside of my bladder when he was > doing my gyne surgery…he said it looked distinctly â > €˜WRONG’ on the lining but not quite like anything heâ > €™s seen before…so THAT will get followed up with a > UROLOGIST…..> > See that’s IT about these darn Connective Tissue > Disorders…they ATTACK indiscriminately ANYWHERE there’s >  Connective Tissue…well that’s a great BIG playing > Field for GREMLINS hey!> > What the Gremlins are really skilled at is covering their tracksâ > €¦â€Âhey’’, they mutter, â€Âdon’t let > her Titers get too high or they’ll find out about us through > the Autoantibody Blood tests they do on her annually.. & lets jump > about all over her body so she just thinks she’s imagining all > this stuff..her GP will start thinking she’s a Full Blown > Hypochondriac & that gives us MORE time to have FUNâ > €¦Wheeeeeeeeeeee!’’> > So, as yet I remain undiagnosed with anything specific but there > are so many Red Flags waving that those Gremlins better watch out > We’re onto ‘em!> > Â> > in Oz                 Â> > Â> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'                Â> > May 2007Â> > Â> >>

[Guest guest]

Aaah my wonderful Air Family...I'm HOME!

love,

> > > >> > > >> > > >> > > > Hiya Air Family.old & new.I've been reading my eye sockets inside> > out> > > > keeping up with y'all! Some of you are doing it pretty tough right> > > now. I do> > > > empathise & heartily hope that each of you gets on an UP drift> SOON!> > > >> > > > Just for any newbies.belated welcome.I'm An Aussie member on the> > Forum> > > & > > > > really appreciate how much I've learnt from everyone here. I can> see> > > that> > > > you've already well n' truly jumped into various threads & are> > > starting many> > > > new ones. Funny how the Prednisone/Vats/O2 subjects are high on> > > everyone's> > > > agenda..NOT!> > > >> > > > I am developing an even stronger interest in the subject of the> > > relationship> > > > between the various known Autoimmune/Connective Tissue Diseases & > > PF.> > > I for> > > > one am a "Work in Progress" as far as a definitive diagnosis goes.> > > There are> > > > ever increasing signs that my PF does have an Autoimmune/CTD> > basis.the> > > big ?> > > > is which one or is it a case of Overlap Syndrome.> > > >> > > > Right now I'm on a quest to get a handle on how these things get> > > diagnosed & > > > > to nut out where I'll find the most expertise in guiding how I> > respond> > > to> > > > the increasing body dramas that are besetting me.> > > >> > > > I reckon I've got a pair of untrustworthy malevolent GREMLINS up> to> > No> > > Good,> > > > resident in my Person! They've decided they're bored creating> havoc> > in> > > my> > > > Lungs & even starting me on the Raynaud's path hasn't satisfied> them> > > one> > > > bit!> > > >> > > > After many months of hoping my left ear would magically stop> driving> > > me> > > > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL> > the> > > time)> > > > , hearing loss, aural fullness sensation, balance problems etc etc> I> > > FINALLY> > > > got in to see an ENT specialist who after full audiology tests has> > > announced> > > > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,> > > Irreversible,> > > > Sensorineural Hearing Loss".> > > >> > > > Basically that means I can't enjoy my precious Music as before> 'cos> > > the> > > > Stereo Effect is wrecked & distorted really badly.some sounds get> > > STUCK & > > > > echo around inside my head like crazy. Understanding Conversation> > with> > > > background noise is also a big bumma but I can handle that OK.it's> > the> > > loss> > > > of quality sound for my Music that is MUCH more depressing for me> > than> > > even> > > > the Lung situation.> > > >> > > > Anyways the ENT guy is REALLY suss that it's Autoimmune related> but> > > sent me> > > > off for a MRI to discount the awful possibility that it might be> an> > > Acoustic> > > > Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT> it> > > has> > > > shown up some areas of damage in my sub cortex compatible with "> > White> > > > Matter Ischaemia or Secondary Demyelination due to a number of> > > possible> > > > causes".> > > >> > > > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,> > > Systemic> > > > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio> > > Vascular> > > > Disease etc)..next stop a Neurologist who will check on how> DEMENTED> > I> > > am> > > > already.well HECK everyone that's been on this Forum a while> already> > > knows> > > > the answer to THAT.my Scilliness has apparent from the start.> > > >> > > > But those darn Gremlins have been mucking about in my Bladder as> > > > well..anyone heard of 'Interstitial Cystitis'.my Gyne man> > investigated> > > the> > > > inside of my bladder when he was doing my gyne surgery.he said it> > > looked> > > > distinctly 'WRONG' on the lining but not quite like anything he's> > seen> > > > before.so THAT will get followed up with a UROLOGIST...> > > >> > > > See that's IT about these darn Connective Tissue Disorders.they> > ATTACK> > > > indiscriminately ANYWHERE there's Connective Tissue.well that's a> > > great BIG> > > > playing Field for GREMLINS hey!> > > >> > > > What the Gremlins are really skilled at is covering their> > > tracks."hey'',> > > > they mutter, "don't let her Titers get too high or they'll find> out> > > about us> > > > through the Autoantibody Blood tests they do on her annually.. & > lets> > > jump> > > > about all over her body so she just thinks she's imagining all> this> > > > stuff..her GP will start thinking she's a Full Blown Hypochondriac> & > > > that> > > > gives us MORE time to have FUN.Wheeeeeeeeeeee!''> > > >> > > > So, as yet I remain undiagnosed with anything specific but there> are> > > so many> > > > Red Flags waving that those Gremlins better watch out We're onto> > 'em!> > > >> > > >> > > >> > > > in Oz> > > >> > > > IPF: Fibrotic NSIP/UIP ??> > > > Reynauds'> > > > May 2007> > > >> > >> >> >> >> >> >> >> >> >> <http://www.smileycentral.com/dl/index.jhtml?partner=ZSzeb114_ZSYYYYYYYY\> \> > AU & utm_id=7922>> >>

[Guest guest]

,

I am so glad that you are back! I am sorry to hear that you have had new symptoms creeping up and invading other parts....well, I know you will fight them off! LOL

I have been dealing with my left eye this summer. I am still making trips back & forth for re-checks. I had the surgery on July 10th. I have scar tissues on the cornesa called Salzman's Nodular Degenerative. At my appointment last week, the cornea surgeon declared that I needed some stem cells to help my left eye heal. He sent me to the hospital for a blood test and 45 minutes later, I have a small bottle of drops to put in my left eye 4 times a day. This bottle contains my own stem cells from my blood and I am putting them in my left eye. The drops seem to be helping.

I went to Emory to the support group meeting yesterday. My pulmodude and his wife/nurse are moving to the University of Louisville to start an ILD Clinic at their university hospital. I did see the new pulmodude that I am going to be seeing as he also spoke to our group. I also saw Joe & Joanie at the meeting. Joe is having the carpel tunnel surgery this morning.

, I love your sweet personality, upbeat spirit. It makes my day. Hope your symptoms subside, especially in the ear!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> > > Hiya Air Family.old & new.I've been reading my eye sockets inside out> keeping up with y'all! Some of you are doing it pretty tough right now. I do> empathise & heartily hope that each of you gets on an UP drift SOON!> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum & > really appreciate how much I've learnt from everyone here. I can see that> you've already well n' truly jumped into various threads & are starting many> new ones. Funny how the Prednisone/Vats/O2 subjects are high on everyone's> agenda..NOT!> > I am developing an even stronger interest in the subject of the relationship> between the various known Autoimmune/Connective Tissue Diseases & PF. I for> one am a "Work in Progress" as far as a definitive diagnosis goes. There are> ever increasing signs that my PF does have an Autoimmune/CTD basis.the big ?> is which one or is it a case of Overlap Syndrome. > > Right now I'm on a quest to get a handle on how these things get diagnosed & > to nut out where I'll find the most expertise in guiding how I respond to> the increasing body dramas that are besetting me. > > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No Good,> resident in my Person! They've decided they're bored creating havoc in my> Lungs & even starting me on the Raynaud's path hasn't satisfied them one> bit!> > After many months of hoping my left ear would magically stop driving me> nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the time)> , hearing loss, aural fullness sensation, balance problems etc etc I FINALLY> got in to see an ENT specialist who after full audiology tests has announced> I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible,> Sensorineural Hearing Loss".> > Basically that means I can't enjoy my precious Music as before 'cos the> Stereo Effect is wrecked & distorted really badly.some sounds get STUCK & > echo around inside my head like crazy. Understanding Conversation with> background noise is also a big bumma but I can handle that OK.it's the loss> of quality sound for my Music that is MUCH more depressing for me than even> the Lung situation. > > Anyways the ENT guy is REALLY suss that it's Autoimmune related but sent me> off for a MRI to discount the awful possibility that it might be an Acoustic> Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it has> shown up some areas of damage in my sub cortex compatible with " White> Matter Ischaemia or Secondary Demyelination due to a number of possible> causes".> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus, Systemic> Scleroderma, Sjoren's as well as just plain old Dementia, Cardio Vascular> Disease etc)..next stop a Neurologist who will check on how DEMENTED I am> already.well HECK everyone that's been on this Forum a while already knows> the answer to THAT.my Scilliness has apparent from the start.> > But those darn Gremlins have been mucking about in my Bladder as> well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated the> inside of my bladder when he was doing my gyne surgery.he said it looked> distinctly 'WRONG' on the lining but not quite like anything he's seen> before.so THAT will get followed up with a UROLOGIST...> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> indiscriminately ANYWHERE there's Connective Tissue.well that's a great BIG> playing Field for GREMLINS hey!> > What the Gremlins are really skilled at is covering their tracks."hey'',> they mutter, "don't let her Titers get too high or they'll find out about us> through the Autoantibody Blood tests they do on her annually.. & lets jump> about all over her body so she just thinks she's imagining all this> stuff..her GP will start thinking she's a Full Blown Hypochondriac & that> gives us MORE time to have FUN.Wheeeeeeeeeeee!'' > > So, as yet I remain undiagnosed with anything specific but there are so many> Red Flags waving that those Gremlins better watch out We're onto 'em!> > > > in Oz > > IPF: Fibrotic NSIP/UIP ??> Reynauds' > May 2007>

[Guest guest]

Jane isn't that truly amazing...Stem Cell therapy from your own blood supply. It just proves how far medical science has come...thsnkfully in time to help YOU!

Hey say Hi to Joe for me...Carpal tunnel surgery must be catching! I'm thrilled that this second surgery I've just had is a breeze compared to the first hand that got done!

I'm amused at both you 'n Peggy calling me 'SWEET'...none in my family would use that particualar description for this tough ol' gal. I'm known as the AMAZON in our family....I must admit it's lovely to try on 'Sweet' just for you two!

lots of love,

> >> >> >> > Hiya Air Family.old & new.I've been reading my eye sockets inside out> > keeping up with y'all! Some of you are doing it pretty tough right> now. I do> > empathise & heartily hope that each of you gets on an UP drift SOON!> >> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum> & > > really appreciate how much I've learnt from everyone here. I can see> that> > you've already well n' truly jumped into various threads & are> starting many> > new ones. Funny how the Prednisone/Vats/O2 subjects are high on> everyone's> > agenda..NOT!> >> > I am developing an even stronger interest in the subject of the> relationship> > between the various known Autoimmune/Connective Tissue Diseases & PF.> I for> > one am a "Work in Progress" as far as a definitive diagnosis goes.> There are> > ever increasing signs that my PF does have an Autoimmune/CTD basis.the> big ?> > is which one or is it a case of Overlap Syndrome.> >> > Right now I'm on a quest to get a handle on how these things get> diagnosed & > > to nut out where I'll find the most expertise in guiding how I respond> to> > the increasing body dramas that are besetting me.> >> > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No> Good,> > resident in my Person! They've decided they're bored creating havoc in> my> > Lungs & even starting me on the Raynaud's path hasn't satisfied them> one> > bit!> >> > After many months of hoping my left ear would magically stop driving> me> > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the> time)> > , hearing loss, aural fullness sensation, balance problems etc etc I> FINALLY> > got in to see an ENT specialist who after full audiology tests has> announced> > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,> Irreversible,> > Sensorineural Hearing Loss".> >> > Basically that means I can't enjoy my precious Music as before 'cos> the> > Stereo Effect is wrecked & distorted really badly.some sounds get> STUCK & > > echo around inside my head like crazy. Understanding Conversation with> > background noise is also a big bumma but I can handle that OK.it's the> loss> > of quality sound for my Music that is MUCH more depressing for me than> even> > the Lung situation.> >> > Anyways the ENT guy is REALLY suss that it's Autoimmune related but> sent me> > off for a MRI to discount the awful possibility that it might be an> Acoustic> > Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it> has> > shown up some areas of damage in my sub cortex compatible with " White> > Matter Ischaemia or Secondary Demyelination due to a number of> possible> > causes".> >> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,> Systemic> > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio> Vascular> > Disease etc)..next stop a Neurologist who will check on how DEMENTED I> am> > already.well HECK everyone that's been on this Forum a while already> knows> > the answer to THAT.my Scilliness has apparent from the start.> >> > But those darn Gremlins have been mucking about in my Bladder as> > well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated> the> > inside of my bladder when he was doing my gyne surgery.he said it> looked> > distinctly 'WRONG' on the lining but not quite like anything he's seen> > before.so THAT will get followed up with a UROLOGIST...> >> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> > indiscriminately ANYWHERE there's Connective Tissue.well that's a> great BIG> > playing Field for GREMLINS hey!> >> > What the Gremlins are really skilled at is covering their> tracks."hey'',> > they mutter, "don't let her Titers get too high or they'll find out> about us> > through the Autoantibody Blood tests they do on her annually.. & lets> jump> > about all over her body so she just thinks she's imagining all this> > stuff..her GP will start thinking she's a Full Blown Hypochondriac & > that> > gives us MORE time to have FUN.Wheeeeeeeeeeee!''> >> > So, as yet I remain undiagnosed with anything specific but there are> so many> > Red Flags waving that those Gremlins better watch out We're onto 'em!> >> >> >> > in Oz> >> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'> > May 2007> >>

[Guest guest]

, I am used to Amazon people.. My hubby is 6'6, his sisters are all three right at 6' . I am 5'3 and am not one bit intimidated.. BUT I don't call them sweet... don't tell. lol Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Jane isn't that truly amazing...Stem Cell therapy from your own blood supply. It just proves how far medical science has come...thsnkfully in time to help YOU!Hey say Hi to Joe for me...Carpal tunnel surgery must be catching! I'm thrilled that this second surgery I've just had is a breeze compared to the first hand that got done! I'm amused at both you 'n Peggy calling me 'SWEET'...none in my family would use that particualar description for this tough ol' gal. I'm known as the AMAZON in our family....I must admit it's lovely to try on 'Sweet' just for you two!lots of love, > >> >> >> > Hiya Air Family.old & new.I've been reading my eye sockets inside out> > keeping up with y'all! Some of you are doing it pretty tough right> now. I do> > empathise & heartily hope that each of you gets on an UP drift SOON!> >> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum> & > > really appreciate how much I've learnt from everyone here. I can see> that> > you've already well n' truly jumped into various threads & are> starting many> > new ones. Funny how the Prednisone/Vats/O2 subjects are high on> everyone's> > agenda..NOT!> >> > I am developing an even stronger interest in the subject of the> relationship> > between the various known Autoimmune/Connective Tissue Diseases & PF.> I for> > one am a "Work in Progress" as far as a definitive diagnosis goes.> There are> > ever increasing signs that my PF does have an Autoimmune/CTD basis.the> big ?> > is which one or is it a case of Overlap Syndrome.> >> > Right now I'm on a quest to get a handle on how these things get> diagnosed & > > to nut out where I'll find the most expertise in guiding how I respond> to> > the increasing body dramas that are besetting me.> >> > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No> Good,> > resident in my Person! They've decided they're bored creating havoc in> my> > Lungs & even starting me on the Raynaud's path hasn't satisfied them> one> > bit!> >> > After many months of hoping my left ear would magically stop driving> me> > nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the> time)> > , hearing loss, aural fullness sensation, balance problems etc etc I> FINALLY> > got in to see an ENT specialist who after full audiology tests has> announced> > I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency,> Irreversible,> > Sensorineural Hearing Loss".> >> > Basically that means I can't enjoy my precious Music as before 'cos> the> > Stereo Effect is wrecked & distorted really badly.some sounds get> STUCK & > > echo around inside my head like crazy. Understanding Conversation with> > background noise is also a big bumma but I can handle that OK.it's the> loss> > of quality sound for my Music that is MUCH more depressing for me than> even> > the Lung situation.> >> > Anyways the ENT guy is REALLY suss that it's Autoimmune related but> sent me> > off for a MRI to discount the awful possibility that it might be an> Acoustic> > Nerve Neuroma..the MRI happily discounted THAT to my relief, BUT it> has> > shown up some areas of damage in my sub cortex compatible with " White> > Matter Ischaemia or Secondary Demyelination due to a number of> possible> > causes".> >> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus,> Systemic> > Scleroderma, Sjoren's as well as just plain old Dementia, Cardio> Vascular> > Disease etc)..next stop a Neurologist who will check on how DEMENTED I> am> > already.well HECK everyone that's been on this Forum a while already> knows> > the answer to THAT.my Scilliness has apparent from the start.> >> > But those darn Gremlins have been mucking about in my Bladder as> > well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated> the> > inside of my bladder when he was doing my gyne surgery.he said it> looked> > distinctly 'WRONG' on the lining but not quite like anything he's seen> > before.so THAT will get followed up with a UROLOGIST...> >> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> > indiscriminately ANYWHERE there's Connective Tissue.well that's a> great BIG> > playing Field for GREMLINS hey!> >> > What the Gremlins are really skilled at is covering their> tracks."hey'',> > they mutter, "don't let her Titers get too high or they'll find out> about us> > through the Autoantibody Blood tests they do on her annually.. & lets> jump> > about all over her body so she just thinks she's imagining all this> > stuff..her GP will start thinking she's a Full Blown Hypochondriac & > that> > gives us MORE time to have FUN.Wheeeeeeeeeeee!''> >> > So, as yet I remain undiagnosed with anything specific but there are> so many> > Red Flags waving that those Gremlins better watch out We're onto 'em!> >> >> >> > in Oz> >> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'> > May 2007> >>

[Guest guest]

Oh Jane, sorry to hear about your eye problems. I hope you get better soon!! CaroMissippi, COPD 2005, UIP January 2007, Sjogren syndrome July 2008, polymyositis/dermatomyositis November 2008, Fatty liver disease June 2009, Lupus (SLE)July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Friday, August 21, 2009 8:38:32 AMSubject: Re: Coooooeeeeeeeeeeeeeeeee

,

I am so glad that you are back! I am sorry to hear that you have had new symptoms creeping up and invading other parts....well, I know you will fight them off! LOL

I have been dealing with my left eye this summer. I am still making trips back & forth for re-checks. I had the surgery on July 10th. I have scar tissues on the cornesa called Salzman's Nodular Degenerative. At my appointment last week, the cornea surgeon declared that I needed some stem cells to help my left eye heal. He sent me to the hospital for a blood test and 45 minutes later, I have a small bottle of drops to put in my left eye 4 times a day. This bottle contains my own stem cells from my blood and I am putting them in my left eye. The drops seem to be helping.

I went to Emory to the support group meeting yesterday. My pulmodude and his wife/nurse are moving to the University of Louisville to start an ILD Clinic at their university hospital. I did see the new pulmodude that I am going to be seeing as he also spoke to our group. I also saw Joe & Joanie at the meeting. Joe is having the carpel tunnel surgery this morning.

, I love your sweet personality, upbeat spirit. It makes my day. Hope your symptoms subside, especially in the ear!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> > > Hiya Air Family.old & new.I've been reading my eye sockets inside out> keeping up with y'all! Some of you are doing it pretty tough right now. I do> empathise & heartily hope that each of you gets on an UP drift SOON!> > Just for any newbies.belated welcome.I'm An Aussie member on the Forum & > really appreciate how much I've learnt from everyone here. I can see that> you've already well n' truly jumped into various threads & are starting many> new ones. Funny how the Prednisone/Vats/ O2 subjects are high on everyone's> agenda..NOT!> > I am developing an even stronger interest in the subject of the relationship> between the various known

Autoimmune/Connecti ve Tissue Diseases & PF. I for> one am a "Work in Progress" as far as a definitive diagnosis goes. There are> ever increasing signs that my PF does have an Autoimmune/CTD basis.the big ?> is which one or is it a case of Overlap Syndrome. > > Right now I'm on a quest to get a handle on how these things get diagnosed & > to nut out where I'll find the most expertise in guiding how I respond to> the increasing body dramas that are besetting me. > > I reckon I've got a pair of untrustworthy malevolent GREMLINS up to No Good,> resident in my Person! They've decided they're bored creating havoc in my> Lungs & even starting me on the Raynaud's path hasn't satisfied them one> bit!> > After many months of hoping my left ear would magically stop driving me> nutty with sound distortion, tinnitus (sea shell ocean sound,,,ALL the

time)> , hearing loss, aural fullness sensation, balance problems etc etc I FINALLY> got in to see an ENT specialist who after full audiology tests has announced> I have " Inner Ear, Sudden Onset, Unilateral, Low Frequency, Irreversible,> Sensorineural Hearing Loss".> > Basically that means I can't enjoy my precious Music as before 'cos the> Stereo Effect is wrecked & distorted really badly.some sounds get STUCK & > echo around inside my head like crazy. Understanding Conversation with> background noise is also a big bumma but I can handle that OK.it's the loss> of quality sound for my Music that is MUCH more depressing for me than even> the Lung situation. > > Anyways the ENT guy is REALLY suss that it's Autoimmune related but sent me> off for a MRI to discount the awful possibility that it might be an Acoustic> Nerve Neuroma..the MRI happily

discounted THAT to my relief, BUT it has> shown up some areas of damage in my sub cortex compatible with " White> Matter Ischaemia or Secondary Demyelination due to a number of possible> causes".> > Three Guesses as to what is included on THAT list (MS, SLE/Lupus, Systemic> Scleroderma, Sjoren's as well as just plain old Dementia, Cardio Vascular> Disease etc)..next stop a Neurologist who will check on how DEMENTED I am> already.well HECK everyone that's been on this Forum a while already knows> the answer to THAT.my Scilliness has apparent from the start.> > But those darn Gremlins have been mucking about in my Bladder as> well..anyone heard of 'Interstitial Cystitis'.my Gyne man investigated the> inside of my bladder when he was doing my gyne surgery.he said it looked> distinctly 'WRONG' on the lining but not quite like anything he's seen>

before.so THAT will get followed up with a UROLOGIST...> > See that's IT about these darn Connective Tissue Disorders.they ATTACK> indiscriminately ANYWHERE there's Connective Tissue.well that's a great BIG> playing Field for GREMLINS hey!> > What the Gremlins are really skilled at is covering their tracks."hey' ',> they mutter, "don't let her Titers get too high or they'll find out about us> through the Autoantibody Blood tests they do on her annually.. & lets jump> about all over her body so she just thinks she's imagining all this> stuff..her GP will start thinking she's a Full Blown Hypochondriac & that> gives us MORE time to have FUN.Wheeeeeeeeeeee! '' > > So, as yet I remain undiagnosed with anything specific but there are so many> Red Flags waving that those Gremlins better watch out We're onto 'em!> > > > in

Oz > > IPF: Fibrotic NSIP/UIP ??> Reynauds' > May 2007>