Re: Sher-NSIP The Earth is Flat

[Guest guest]

Why, THE EARTH IS FLAT? Well, because it shows how imperfect science is

as that was so well accepted. Now, when it comes to PF, we have forms

diagnosed, we have causes guessed at, we have so much information given

about a group of diseases we don't understand. So, we must remember

there are no absolutes. When that doctor is telling you that you have

NSIP or anything else its by his best guess based on today's science.

It's based on a certain pathology or appearance. But everyone sees

different, every CT is different. I was told quite strongly this week by

a doctor in a hospital that they would never trust a CT taken outside a

hospital, the quality of the CT and the radiology just wasn't the same.

Now, that's one person's opinion.

UIP (sometimes referred to as IPF but IPF also used to represent all

idiopathic at other times) does have different appearances and seems to

be different but it is a fairly recent separation and who knows what

they will decide next. So, just keep in mind how you are and how you're

doing and how you feel. Isn't that all that really matters? By

definition and history doctors who do separate UIP/IPF from NSIP and

others would declare that you don't have UIP. Why? Because you are doing

too well, too long down the road. If they took a biopsy they'd decide

based on honeycombing and other factors. Reality check-don't you know

how you are by how you're breathing and your oximeter? You're doing well

and you may continue to do so for ages and ages.

I always laugh when the doctors go down the list of things to try to

figure out what might have caused the disease. I can always say yes to

two thirds of the list. But, the reality is they don't know what causes

the disease...period...don't know....so even that list is somewhat

speculation. The latest trend is actually them thinking there is a

combination-that there is genetics and a predisposition or

succeptability and then its caused from there based on something

environmental or otherwise, as yet to be determined.

My neurologist is extremely interesting and entertaining. When it comes

to neurology he has stated I probably have a disease that hasn't been

invented yet. Well, its true. I do have restless limbs and peripheral

neuropathy. I had restless limbs as a child and doctors made all sorts

of guesses and determinations, all wrong, as the disease hadn't been

discovered and classified. I still believe medical science is in its

infancy and certainly Interstitial Lung Diseases support that belief.

Let me toss a wild one. I know a sleep disorder neurologist with a

psychiatric leaning who has been trying to get Alien Abduction Disorder

officially listed as a condition. It is recognized but they need more

documentation. What is it? Well, you've seen and read about losing a few

seconds from your life, as if time stopped and then returning. If you've

seen X-Files it happened there. In reality many people have the feeling

as if that happened. Why? Well, they have discovered a condition in

which your brain actually stops functioning for a few seconds leaving

you with that feeling. So all those they mocked and laughed about have a

real condition. No, they weren't abducted. But their symptoms now trace

to a real condition.

So, educate yourself as you can but remember for everything they know

about diseases, there are millions of things they don't know yet.

> > > >

> > > > Sher,

> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP

> > > is definitely preferable to IPF, the life expectancy is much

longer

> > > and as a bonus, it does not always progress. As a matter of fact,

> > > Dr. on at Duke just told me last month that he's seen

patients

> > > with NSIP who have been " stable for decades. " I mean I know that

my

> > > experience may be different but anything that gives us hope is

> > > helpful!

> > > > Have they switched your dx based on the behavior of the disease

or

> > > also on the ct scan results? NSIP is usually very identifiable by

CT

> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)

you

> > > would need a biopsy. But at this point it probably doesn't matter

as

> > > long as your stable. I understand why you wouldn't put yourself

> > > through that. I don't regret my biopsy but I totally get why

you've

> > > chosen not to go down that road.

> > > > In the meantime, celebrate stability!! Stable is my happy word!!

> > > > Beth

> > > > Age 48 Fibrotic NSIP 06/06

> > > >

> > > > Change everything. Love and Forgive

> > > >

> > >

> >

>

>

>

>

>

>

> Caro

> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08

> Mississippi

> ____________ _________ _________ _________ _________ __

>

[Guest guest]

Bruce!!! Hey, are you home??

I haven't even read this post yet...wanted to let you know you were missed...

now I'll go read.........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP The Earth is Flat

Why, THE EARTH IS FLAT? Well, because it shows how imperfect science isas that was so well accepted. Now, when it comes to PF, we have formsdiagnosed, we have causes guessed at, we have so much information givenabout a group of diseases we don't understand. So, we must rememberthere are no absolutes. When that doctor is telling you that you haveNSIP or anything else its by his best guess based on today's science.It's based on a certain pathology or appearance. But everyone seesdifferent, every CT is different. I was told quite strongly this week bya doctor in a hospital that they would never trust a CT taken outside ahospital, the quality of the CT and the radiology just wasn't the same.Now, that's one person's opinion.UIP (sometimes referred to as IPF but IPF also used to represent allidiopathic at other times) does have different appearances and seems tobe different but it is a fairly recent separation and who knows whatthey will decide next. So, just keep in mind how you are and how you'redoing and how you feel. Isn't that all that really matters? Bydefinition and history doctors who do separate UIP/IPF from NSIP andothers would declare that you don't have UIP. Why? Because you are doingtoo well, too long down the road. If they took a biopsy they'd decidebased on honeycombing and other factors. Reality check-don't you knowhow you are by how you're breathing and your oximeter? You're doing welland you may continue to do so for ages and ages.I always laugh when the doctors go down the list of things to try tofigure out what might have caused the disease. I can always say yes totwo thirds of the list. But, the reality is they don't know what causesthe disease...period...don't know....so even that list is somewhatspeculation. The latest trend is actually them thinking there is acombination-that there is genetics and a predisposition orsucceptability and then its caused from there based on somethingenvironmental or otherwise, as yet to be determined.My neurologist is extremely interesting and entertaining. When it comesto neurology he has stated I probably have a disease that hasn't beeninvented yet. Well, its true. I do have restless limbs and peripheralneuropathy. I had restless limbs as a child and doctors made all sortsof guesses and determinations, all wrong, as the disease hadn't beendiscovered and classified. I still believe medical science is in itsinfancy and certainly Interstitial Lung Diseases support that belief.Let me toss a wild one. I know a sleep disorder neurologist with apsychiatric leaning who has been trying to get Alien Abduction Disorderofficially listed as a condition. It is recognized but they need moredocumentation. What is it? Well, you've seen and read about losing a fewseconds from your life, as if time stopped and then returning. If you'veseen X-Files it happened there. In reality many people have the feelingas if that happened. Why? Well, they have discovered a condition inwhich your brain actually stops functioning for a few seconds leavingyou with that feeling. So all those they mocked and laughed about have areal condition. No, they weren't abducted. But their symptoms now traceto a real condition.So, educate yourself as you can but remember for everything they knowabout diseases, there are millions of things they don't know yet.> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is muchlonger> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seenpatients> > > with NSIP who have been "stable for decades." I mean I know thatmy> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the diseaseor> > > also on the ct scan results? NSIP is usually very identifiable byCT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)you> > > would need a biopsy. But at this point it probably doesn't matteras> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get whyyou've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >>>>>>>> Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,RHEUMATOID ARTHRITIS 03/08> Mississippi> ____________ _________ _________ _________ _________ __>

[Guest guest]

Bruce...I'm sorry~~ I feel scolded. lol. I bet you do get tired repeating yourself over and over. It's a tough job but someone has to do it. lol.

You are certainly right about my knowing my own general condition. I'm grateful the so-called Dx has been changed to a strain that is slow developing of course. I temporarily got off track trying to "follow Dr. orders" that if SATS are up....don't need O2. YES, I do need O2 even if SATS are up. It really helps when I am sob.

Back on one day at a time and stop obsessing Mama!

Glad to hear from you.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP The Earth is Flat

Why, THE EARTH IS FLAT? Well, because it shows how imperfect science isas that was so well accepted. Now, when it comes to PF, we have formsdiagnosed, we have causes guessed at, we have so much information givenabout a group of diseases we don't understand. So, we must rememberthere are no absolutes. When that doctor is telling you that you haveNSIP or anything else its by his best guess based on today's science.It's based on a certain pathology or appearance. But everyone seesdifferent, every CT is different. I was told quite strongly this week bya doctor in a hospital that they would never trust a CT taken outside ahospital, the quality of the CT and the radiology just wasn't the same.Now, that's one person's opinion.UIP (sometimes referred to as IPF but IPF also used to represent allidiopathic at other times) does have different appearances and seems tobe different but it is a fairly recent separation and who knows whatthey will decide next. So, just keep in mind how you are and how you'redoing and how you feel. Isn't that all that really matters? Bydefinition and history doctors who do separate UIP/IPF from NSIP andothers would declare that you don't have UIP. Why? Because you are doingtoo well, too long down the road. If they took a biopsy they'd decidebased on honeycombing and other factors. Reality check-don't you knowhow you are by how you're breathing and your oximeter? You're doing welland you may continue to do so for ages and ages.I always laugh when the doctors go down the list of things to try tofigure out what might have caused the disease. I can always say yes totwo thirds of the list. But, the reality is they don't know what causesthe disease...period...don't know....so even that list is somewhatspeculation. The latest trend is actually them thinking there is acombination-that there is genetics and a predisposition orsucceptability and then its caused from there based on somethingenvironmental or otherwise, as yet to be determined.My neurologist is extremely interesting and entertaining. When it comesto neurology he has stated I probably have a disease that hasn't beeninvented yet. Well, its true. I do have restless limbs and peripheralneuropathy. I had restless limbs as a child and doctors made all sortsof guesses and determinations, all wrong, as the disease hadn't beendiscovered and classified. I still believe medical science is in itsinfancy and certainly Interstitial Lung Diseases support that belief.Let me toss a wild one. I know a sleep disorder neurologist with apsychiatric leaning who has been trying to get Alien Abduction Disorderofficially listed as a condition. It is recognized but they need moredocumentation. What is it? Well, you've seen and read about losing a fewseconds from your life, as if time stopped and then returning. If you'veseen X-Files it happened there. In reality many people have the feelingas if that happened. Why? Well, they have discovered a condition inwhich your brain actually stops functioning for a few seconds leavingyou with that feeling. So all those they mocked and laughed about have areal condition. No, they weren't abducted. But their symptoms now traceto a real condition.So, educate yourself as you can but remember for everything they knowabout diseases, there are millions of things they don't know yet.> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is muchlonger> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seenpatients> > > with NSIP who have been "stable for decades." I mean I know thatmy> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the diseaseor> > > also on the ct scan results? NSIP is usually very identifiable byCT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)you> > > would need a biopsy. But at this point it probably doesn't matteras> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get whyyou've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >>>>>>>> Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,RHEUMATOID ARTHRITIS 03/08> Mississippi> ____________ _________ _________ _________ _________ __>

[Guest guest]

Bruce, you are exactly right-there are a billion things that

science/medicine DOESN'T know about the pulmonary fibrosis that affects

all of us. They're guessing at some of it and waiting and watching for

the results. I have my own philosophy about UIP and IPF. One can be

stricken with IPF - unknown cause of fibrosis in the lungs. UIP is the

honeycombing taking over the lungs that are stricken with IPF. That is

my philosophy.

Toodles & Glad you are back!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > > > >

> > > > > Sher,

> > > > > I'm happy to hear the doctors have switched your diagnosis.

NSIP

> > > > is definitely preferable to IPF, the life expectancy is much

> longer

> > > > and as a bonus, it does not always progress. As a matter of

fact,

> > > > Dr. on at Duke just told me last month that he's seen

> patients

> > > > with NSIP who have been " stable for decades. " I mean I know that

> my

> > > > experience may be different but anything that gives us hope is

> > > > helpful!

> > > > > Have they switched your dx based on the behavior of the

disease

> or

> > > > also on the ct scan results? NSIP is usually very identifiable

by

> CT

> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)

> you

> > > > would need a biopsy. But at this point it probably doesn't

matter

> as

> > > > long as your stable. I understand why you wouldn't put yourself

> > > > through that. I don't regret my biopsy but I totally get why

> you've

> > > > chosen not to go down that road.

> > > > > In the meantime, celebrate stability!! Stable is my happy

word!!

> > > > > Beth

> > > > > Age 48 Fibrotic NSIP 06/06

> > > > >

> > > > > Change everything. Love and Forgive

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> > Caro

> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> RHEUMATOID ARTHRITIS 03/08

> > Mississippi

> > ____________ _________ _________ _________ _________ __

> >

[Guest guest]

Sher

Missed you too and not scolding, just reminding us all. Either I can say

I'm dying, which I am at some rate but no one knows what or I can enjoy

living the best I can. I just drove 2000 miles and six states so must

not be dead quite yet.

> > > > >

> > > > > Sher,

> > > > > I'm happy to hear the doctors have switched your diagnosis.

NSIP

> > > > is definitely preferable to IPF, the life expectancy is much

> longer

> > > > and as a bonus, it does not always progress. As a matter of

fact,

> > > > Dr. on at Duke just told me last month that he's seen

> patients

> > > > with NSIP who have been " stable for decades. " I mean I know that

> my

> > > > experience may be different but anything that gives us hope is

> > > > helpful!

> > > > > Have they switched your dx based on the behavior of the

disease

> or

> > > > also on the ct scan results? NSIP is usually very identifiable

by

> CT

> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)

> you

> > > > would need a biopsy. But at this point it probably doesn't

matter

> as

> > > > long as your stable. I understand why you wouldn't put yourself

> > > > through that. I don't regret my biopsy but I totally get why

> you've

> > > > chosen not to go down that road.

> > > > > In the meantime, celebrate stability!! Stable is my happy

word!!

> > > > > Beth

> > > > > Age 48 Fibrotic NSIP 06/06

> > > > >

> > > > > Change everything. Love and Forgive

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> > Caro

> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> RHEUMATOID ARTHRITIS 03/08

> > Mississippi

> > ____________ _________ _________ _________ _________ __

> >