Re: members from Australia?

[Guest guest]

I am from Australia, and yes neurosarcoid specialists don't seem to exist!

I suggest you push for a Gallium scan, that will light up any hidden sarcoid, it

was the most beneficial diagnostic test I had after years of misdiagnosis.

What state are you in?

Rach

>

>

> Sherrie, did you say that you are from Australia? We have a few list members

from Australia; hopefully someone will see these posts & offer some info. I

looked on a website for sarc docs & found one in Australia; I don't know how

current this info is but you could check it out. Even if this guy isn't near

you, he may be able to refer you to someone.

>

> , Dr. Roger K. A.

> Thoracic Consultant Physician Wesley Medical Centre

> Level 4, Suite 46

> 40 Chasely Street

> Auchenflower Qld 4066

> Brisbane, Australia

> Phone: (07) 3719 5577 Fax: (07) 3719 5177

> respiratorylab@...

>

> You might also try e-mailing Dr. Sharma, one of the top sarc docs in the

world, to see if he knows someone in your area. This is his contact info:

>

> Sharma, Om P. M.D.

> University of Southern California Medical Center

> 1200 North State Street Room 11900

> Los Angeles, CA 90033

>

>

>

> " The work up for sarcoidosis was an xray of the chest, serum ACE and calcium

and a lumbar puncture. I was told that these were all clear. " Although most

folks with sarc have lung involvement, at least enlarged hilar nodes, there are

many who don't. Some have only neuro or cardiac involvement. I for one have

never had an elevated ACE; initially I thought it was because I was taking an

ACE-inhibitor for hypertension. After being switched to other meds, my ACE has

still been normal. My calcium & spinal tap were also normal. I guess I was

lucky to have positive lymph node & lung biopsies, then when I developed neuro

symptoms it was easier to get the NS diagnosis (even with negative MRI's).

That's why it's so important to have a knowledgeable doc, who uses a detailed

history & very thorough physical exam, not just technology. In a perfect world

doctors

> would be skilled in the art of medicine as well as the science. You do seem

to have amassed quite a collection of " ologists! " You didn't mention a

dermatologist for the skin changes, or an opthamologist for your eyes. It's

important to see an MD for these kinds of eye problems, rather than an optician.

Opticians are fine for routine eye exams, glasses, etc. The frustrating thing

is to find someone who can try to tie all these issues together. Often a

rheumatologist is good for that, but maybe this one isn't up to the job. It's

certainly possible to have more than one condition, but often when you have this

many systems involved there is an underlying factor at work. I'm not a doctor,

but I am a retired RN/nurse-midwife with a lot of experience trying to plow

through the medical maze.

>

> I'd really like to see you get sarc ruled out by a more thorough workup than

what you've had. If it's not sarc, one of these ologists ought to be able to

figure out what it is! Meanwhile, you may want to try the antidepressant, if

only to improve your ability to cope & function. It can take two or more weeks

for the med to kick in, so be patient. And if possible, do your own research,

putting in some of your main symptoms & seeing what pops up. Many of us have

had to educate our docs; some have been told they can't have NS because it's too

rare! Arrrrrgggghhh! And they wonder why so many patients go to the Internet.

>

> As you can see, I've earned my nickname of Ramblin' Rose. This group is

usually much more active; not sure if it's the heat here in the States or what.

Hopefully we'll get some more input from other members. Just remember, whether

it's the sarc monster (Darlene's name for it) or some other unsavory entity, you

are not alone.

>

>

>

> Ramblin' Rose

> Moderator

>

>

>

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant of the

weak and the strong. Because someday in life you will have been all of these. "

>

> ~ Washington Carver

>

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: chron_os@...

> > Date: Sun, 8 Aug 2010 01:54:13 +0000

> > Subject: Re: Antidepressants

> >

> > Hi Rose,

> > The neurological problems have waxed and waned over the past three years,

around the same time I was diagnosed with hypopituitarism. The fatigue and

cognitive problems temporarly resolved with cortisol replacement. The chronic

pain resolved with both thyroid and cortisol replacements. I also get weird

vision - despite being 20/20. Also, when I lay on my face, such as in a massage,

I can barely see for quite some time afterwards. They recently found that I have

inflammation of the conjunctiva and I've been referred to an eye

specialist...the top corners of my eyes, especially the right, are white and

limpy. I also have red lumps on my cheeks and, when cold, my skin shows lots of

white spots.

> >

> > The work up for sarcoidosis was an xray of the chest, serum ACE and calcium

and a lumbar puncture. I was told that these were all clear. I have an

endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no

faith in docs... it's just that I don't know where the good one's are and am

wearing very thin! There doesn't seem to be many sarc specialists in Aus...

particularly my state. My husband is great and has said that there is no

pressure to work more than 3 days a week... but it's still hard because

everything is relative and he cannot quite grasp that concept!

> >

> > Thanks

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

Hi Rach, so sorry about the delay! I'm in ... you? I actually emailed

Dr. some time ago but he never responded ): I've started taking Effexor

yesterday morning... It's pretty potent... my eyes are really dilated! Anyway,

I shall persist in the hope that everything rights itself soon. I'm due to see

my endo next Friday... I'm going to gently grill him about why the cause of the

hypopituitarism has never been investigated. I also ask about having Gallium

scans...

Thanks heaps,

Sherrie

> >

> >

> > Sherrie, did you say that you are from Australia? We have a few list

members from Australia; hopefully someone will see these posts & offer some

info. I looked on a website for sarc docs & found one in Australia; I don't

know how current this info is but you could check it out. Even if this guy

isn't near you, he may be able to refer you to someone.

> >

> > , Dr. Roger K. A.

> > Thoracic Consultant Physician Wesley Medical Centre

> > Level 4, Suite 46

> > 40 Chasely Street

> > Auchenflower Qld 4066

> > Brisbane, Australia

> > Phone: (07) 3719 5577 Fax: (07) 3719 5177

> > respiratorylab@

> >

> > You might also try e-mailing Dr. Sharma, one of the top sarc docs in the

world, to see if he knows someone in your area. This is his contact info:

> >

> > Sharma, Om P. M.D.

> > University of Southern California Medical Center

> > 1200 North State Street Room 11900

> > Los Angeles, CA 90033

> >

> >

> >

> > " The work up for sarcoidosis was an xray of the chest, serum ACE and calcium

and a lumbar puncture. I was told that these were all clear. " Although most

folks with sarc have lung involvement, at least enlarged hilar nodes, there are

many who don't. Some have only neuro or cardiac involvement. I for one have

never had an elevated ACE; initially I thought it was because I was taking an

ACE-inhibitor for hypertension. After being switched to other meds, my ACE has

still been normal. My calcium & spinal tap were also normal. I guess I was

lucky to have positive lymph node & lung biopsies, then when I developed neuro

symptoms it was easier to get the NS diagnosis (even with negative MRI's).

That's why it's so important to have a knowledgeable doc, who uses a detailed

history & very thorough physical exam, not just technology. In a perfect world

doctors

> > would be skilled in the art of medicine as well as the science. You do seem

to have amassed quite a collection of " ologists! " You didn't mention a

dermatologist for the skin changes, or an opthamologist for your eyes. It's

important to see an MD for these kinds of eye problems, rather than an optician.

Opticians are fine for routine eye exams, glasses, etc. The frustrating thing

is to find someone who can try to tie all these issues together. Often a

rheumatologist is good for that, but maybe this one isn't up to the job. It's

certainly possible to have more than one condition, but often when you have this

many systems involved there is an underlying factor at work. I'm not a doctor,

but I am a retired RN/nurse-midwife with a lot of experience trying to plow

through the medical maze.

> >

> > I'd really like to see you get sarc ruled out by a more thorough workup than

what you've had. If it's not sarc, one of these ologists ought to be able to

figure out what it is! Meanwhile, you may want to try the antidepressant, if

only to improve your ability to cope & function. It can take two or more weeks

for the med to kick in, so be patient. And if possible, do your own research,

putting in some of your main symptoms & seeing what pops up. Many of us have

had to educate our docs; some have been told they can't have NS because it's too

rare! Arrrrrgggghhh! And they wonder why so many patients go to the Internet.

> >

> > As you can see, I've earned my nickname of Ramblin' Rose. This group is

usually much more active; not sure if it's the heat here in the States or what.

Hopefully we'll get some more input from other members. Just remember, whether

it's the sarc monster (Darlene's name for it) or some other unsavory entity, you

are not alone.

> >

> >

> >

> > Ramblin' Rose

> > Moderator

> >

> >

> >

> > " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant of the

weak and the strong. Because someday in life you will have been all of these. "

> >

> > ~ Washington Carver

> >

> >

> >

> >

> >

> >

> > > To: Neurosarcoidosis

> > > From: chron_os@

> > > Date: Sun, 8 Aug 2010 01:54:13 +0000

> > > Subject: Re: Antidepressants

> > >

> > > Hi Rose,

> > > The neurological problems have waxed and waned over the past three years,

around the same time I was diagnosed with hypopituitarism. The fatigue and

cognitive problems temporarly resolved with cortisol replacement. The chronic

pain resolved with both thyroid and cortisol replacements. I also get weird

vision - despite being 20/20. Also, when I lay on my face, such as in a massage,

I can barely see for quite some time afterwards. They recently found that I have

inflammation of the conjunctiva and I've been referred to an eye

specialist...the top corners of my eyes, especially the right, are white and

limpy. I also have red lumps on my cheeks and, when cold, my skin shows lots of

white spots.

> > >

> > > The work up for sarcoidosis was an xray of the chest, serum ACE and

calcium and a lumbar puncture. I was told that these were all clear. I have an

endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no

faith in docs... it's just that I don't know where the good one's are and am

wearing very thin! There doesn't seem to be many sarc specialists in Aus...

particularly my state. My husband is great and has said that there is no

pressure to work more than 3 days a week... but it's still hard because

everything is relative and he cannot quite grasp that concept!

> > >

> > > Thanks

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > > The Neurosarcoidosis Community

> > >

> > >

> > >

> > > Message Archives:-

> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > >

> > > Members Database:-

> > > Listings of locations, phone numbers, and instant messengers.

> > > http://groups.yahoo.com/group/Neurosarcoidosis/database

> > >

> > >

[Guest guest]

Hi Sherrie,

I'm in too. I was misdiagnosed for 6 years - told I had multiple

sclerosis and uveitis so it's not an easy diagnosis to arrive at...They did

check for sarcoid a couple of times but it's a sneaky little bugger amd can

hide. I've had a lot of methylpred over the years and that was my saving grace I

guess because it works for any inflammation... Which hospital do you go to?

Rach

> > >

> > >

> > > Sherrie, did you say that you are from Australia? We have a few list

members from Australia; hopefully someone will see these posts & offer some

info. I looked on a website for sarc docs & found one in Australia; I don't

know how current this info is but you could check it out. Even if this guy

isn't near you, he may be able to refer you to someone.

> > >

> > > , Dr. Roger K. A.

> > > Thoracic Consultant Physician Wesley Medical Centre

> > > Level 4, Suite 46

> > > 40 Chasely Street

> > > Auchenflower Qld 4066

> > > Brisbane, Australia

> > > Phone: (07) 3719 5577 Fax: (07) 3719 5177

> > > respiratorylab@

> > >

> > > You might also try e-mailing Dr. Sharma, one of the top sarc docs in the

world, to see if he knows someone in your area. This is his contact info:

> > >

> > > Sharma, Om P. M.D.

> > > University of Southern California Medical Center

> > > 1200 North State Street Room 11900

> > > Los Angeles, CA 90033

> > >

> > >

> > >

> > > " The work up for sarcoidosis was an xray of the chest, serum ACE and

calcium and a lumbar puncture. I was told that these were all clear. " Although

most folks with sarc have lung involvement, at least enlarged hilar nodes, there

are many who don't. Some have only neuro or cardiac involvement. I for one

have never had an elevated ACE; initially I thought it was because I was taking

an ACE-inhibitor for hypertension. After being switched to other meds, my ACE

has still been normal. My calcium & spinal tap were also normal. I guess I was

lucky to have positive lymph node & lung biopsies, then when I developed neuro

symptoms it was easier to get the NS diagnosis (even with negative MRI's).

That's why it's so important to have a knowledgeable doc, who uses a detailed

history & very thorough physical exam, not just technology. In a perfect world

doctors

> > > would be skilled in the art of medicine as well as the science. You do

seem to have amassed quite a collection of " ologists! " You didn't mention a

dermatologist for the skin changes, or an opthamologist for your eyes. It's

important to see an MD for these kinds of eye problems, rather than an optician.

Opticians are fine for routine eye exams, glasses, etc. The frustrating thing

is to find someone who can try to tie all these issues together. Often a

rheumatologist is good for that, but maybe this one isn't up to the job. It's

certainly possible to have more than one condition, but often when you have this

many systems involved there is an underlying factor at work. I'm not a doctor,

but I am a retired RN/nurse-midwife with a lot of experience trying to plow

through the medical maze.

> > >

> > > I'd really like to see you get sarc ruled out by a more thorough workup

than what you've had. If it's not sarc, one of these ologists ought to be able

to figure out what it is! Meanwhile, you may want to try the antidepressant, if

only to improve your ability to cope & function. It can take two or more weeks

for the med to kick in, so be patient. And if possible, do your own research,

putting in some of your main symptoms & seeing what pops up. Many of us have

had to educate our docs; some have been told they can't have NS because it's too

rare! Arrrrrgggghhh! And they wonder why so many patients go to the Internet.

> > >

> > > As you can see, I've earned my nickname of Ramblin' Rose. This group is

usually much more active; not sure if it's the heat here in the States or what.

Hopefully we'll get some more input from other members. Just remember, whether

it's the sarc monster (Darlene's name for it) or some other unsavory entity, you

are not alone.

> > >

> > >

> > >

> > > Ramblin' Rose

> > > Moderator

> > >

> > >

> > >

> > > " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant of the

weak and the strong. Because someday in life you will have been all of these. "

> > >

> > > ~ Washington Carver

> > >

> > >

> > >

> > >

> > >

> > >

> > > > To: Neurosarcoidosis

> > > > From: chron_os@

> > > > Date: Sun, 8 Aug 2010 01:54:13 +0000

> > > > Subject: Re: Antidepressants

> > > >

> > > > Hi Rose,

> > > > The neurological problems have waxed and waned over the past three

years, around the same time I was diagnosed with hypopituitarism. The fatigue

and cognitive problems temporarly resolved with cortisol replacement. The

chronic pain resolved with both thyroid and cortisol replacements. I also get

weird vision - despite being 20/20. Also, when I lay on my face, such as in a

massage, I can barely see for quite some time afterwards. They recently found

that I have inflammation of the conjunctiva and I've been referred to an eye

specialist...the top corners of my eyes, especially the right, are white and

limpy. I also have red lumps on my cheeks and, when cold, my skin shows lots of

white spots.

> > > >

> > > > The work up for sarcoidosis was an xray of the chest, serum ACE and

calcium and a lumbar puncture. I was told that these were all clear. I have an

endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no

faith in docs... it's just that I don't know where the good one's are and am

wearing very thin! There doesn't seem to be many sarc specialists in Aus...

particularly my state. My husband is great and has said that there is no

pressure to work more than 3 days a week... but it's still hard because

everything is relative and he cannot quite grasp that concept!

> > > >

> > > > Thanks

> > > >

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > > > The Neurosarcoidosis Community

> > > >

> > > >

> > > >

> > > > Message Archives:-

> > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > > >

> > > > Members Database:-

> > > > Listings of locations, phone numbers, and instant messengers.

> > > > http://groups.yahoo.com/group/Neurosarcoidosis/database

> > > >

> > > >

[Guest guest]

Hi Rach,

Howz that! My endo is at the Alfred and my neuro is based at Monash Medical

Centre... What about you?

[Guest guest]

My neuro is at Box Hill but it is linked to the Royal Melbourne, and my opthal

is a private clinic.

>

> Hi Rach,

> Howz that! My endo is at the Alfred and my neuro is based at Monash Medical

Centre... What about you?

>

[Guest guest]

Well, it's great to know that there's someone nearby! Did it take long for you

to be diagnosed? I really find the whole thing completely frustrating!

[Guest guest]

It took 7 years, got the neurological symtoms 2002, diagnosed with MS 2004 and

rediagnosed 2009 when the gallium scan showed what MRIs and CT scans missed.

>

> Well, it's great to know that there's someone nearby! Did it take long for you

to be diagnosed? I really find the whole thing completely frustrating!

>

[Guest guest]

Hmm, I thought I'd replied to this so two similar messages might come through

but for the life of me can't remember exactly!

I had my first major neurological symptoms in 2002, was misdiagnosed with MS in

2004 and rediagnosed with sarcoidosis in 2009 after that all important gallium

scan which showed it was in more than just my central nervous system and eyes.

The gallium scan showed what the MRI and CT scan missed which is why if you can

get one it will be helpful.

They should do it, from a medicare point of view it cost the same as a brain and

spine MRI.

>

> Well, it's great to know that there's someone nearby! Did it take long for you

to be diagnosed? I really find the whole thing completely frustrating!

>

[Guest guest]

That's just a shocker ): I was diagnosed with hypopituitarism 3.5 years ago

after about a year of chronic symptoms... It's just woeful how long it all

takes!

> >

> > Well, it's great to know that there's someone nearby! Did it take long for

you to be diagnosed? I really find the whole thing completely frustrating!

> >

>

[Guest guest]

Rach, did you have an elevated ACE or any biopsies positive for sarc?

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Tue, 17 Aug 2010 02:48:57 +0000> Subject: Re: members from Australia?> > It took 7 years, got the neurological symtoms 2002, diagnosed with MS 2004 and rediagnosed 2009 when the gallium scan showed what MRIs and CT scans missed.> > > >> > Well, it's great to know that there's someone nearby! Did it take long for you to be diagnosed? I really find the whole thing completely frustrating!> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

I had a mediastinoscopy and what they took was entirely sarcoid.

> > >

> > > Well, it's great to know that there's someone nearby! Did it take long for

you to be diagnosed? I really find the whole thing completely frustrating!

> > >

> >

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

Rach, if you have known sarcoidosis, then develop neurologic symptoms, it's neurosarc if they have ruled out everything else, like MS. I hope you can find a knowledgeable doctor soon. When that happens, make sure you know the options for treatment. We have tons of stuff on that in the archives & we'll give you guidance. Try to take someone with you as your advocate, and also take a tape recorder. You will probably remember very little of what is said.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Wed, 18 Aug 2010 06:26:42 +0000> Subject: Re: members from Australia?> > I had a mediastinoscopy and what they took was entirely sarcoid.> > > > > >> > > > Well, it's great to know that there's someone nearby! Did it take long for you to be diagnosed? I really find the whole thing completely frustrating!> > > >> > > > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > >

[Guest guest]

My MS wasn't typical they assumed it was MS because at the time they couldn't

find the sarcoid.

But I'm all under control now and being looked after, Sherrie is looking for

diagnosis/doctor.

> > > > >

> > > > > Well, it's great to know that there's someone nearby! Did it take long

for you to be diagnosed? I really find the whole thing completely frustrating!

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > > > The Neurosarcoidosis Community

> > > >

> > > >

> > > >

> > > > Message Archives:-

> > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > > >

> > > > Members Database:-

> > > > Listings of locations, phone numbers, and instant messengers.

> > > > http://groups.yahoo.com/group/Neurosarcoidosis/database

> > > >

> > > >

[Guest guest]

Ooops . . . . . my bad! Years ago I used to keep notes on different members so I wouldn't get them mixed up. But as the group got larger & my memory got smaller, I gave that up. I'm glad that you're in good hands; hopefully Sherrie will find some answers soon.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Thu, 19 Aug 2010 00:30:10 +0000> Subject: Re: members from Australia?> > My MS wasn't typical they assumed it was MS because at the time they couldn't find the sarcoid. > But I'm all under control now and being looked after, Sherrie is looking for diagnosis/doctor.> > > > > > > >> > > > > > Well, it's great to know that there's someone nearby! Did it take long for you to be diagnosed? I really find the whole thing completely frustrating!> > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > > > The Neurosarcoidosis Community> > > > > > > > > > > > > > > > > > > > Message Archives:-> > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > > > > > Members Database:-> > > > > Listings of locations, phone numbers, and instant messengers.> > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > > >