Re: An update on my much needed last venting post

[Guest guest]

Dear Toni, This is one of the moderators, and let me start by saying

that your doctors are full of crap... You need to follow through with what

Aisha told you, and go to the doctor she shared information with you.. You

may not have NS.. but girlfriend let me tell you, its very well worth

checking out because its better treated earlier than later...Sounds like to

me they just don't want to do the ground work which is very extensive...MRI

s. LP's.. Lab work out the yang yang...Sed rates, Crp's, Ace levels, Ct's.

.. its all needed to make a correct diagnosis, and still alot of the time NS

is diagnoised by ruling out other things, Yes you may have fibromyalgia, not

a uncommon, we all have muscle pain, which is fibromyalgia, but we also have

bone pain which is not....Aisha, got her disability from Austrailia the

first try with a working diagnosis of Neurosarcoidosis... so its not unheard

of, if your doctors do the proper documentation... We also have tremors and

jerks, does that mean we have Parkinsons Disease... NOPE... just sounds like

your doctors don't want to deal with it.. girl.. I'm telling you to run, don

t walk... to a set of different doctors that will work you up... and find

out for sure what is wrong with you...This is tragic that they are treating

you this way, you have the information of a good doctor, that Ish has given

you.. Please, Please, Please... see him...

Hugs,

-- An update on my much needed last venting post

Hi everyone,

I hope all of us are well and for those of us who aren't, then love and

healing thoughts to all of you for a speedy being of relative wellness to

return.

, thanks for all your kind words. I would really appreciate that

article on the dx of NS for my own interest also. Yes I am in Australia

and I would imagine our Social Security system is quite different to yours,

but thank you very much all the same.

I had to see my GP and go to the hospital for my check up today. I was

armed with all my bits of paper asking about more blood tests, liver enzyme

tests and a sputum test because of this persistent cough but they just

weren't interested and told me to forget about the NS. I didn't get to see

my regular rheumy as he was away conducting exams with new medical

students. My GP said that my regular rheumy has decided on a diagnosis of

fibromyalgia despite all the other symptoms I have had including my

seizure, brain lesion on the VII cranial nerve, my bout of bells palsy, my

fuzzy brain and total change in cognitive thinking and ability to function

as I did before I became ill and a million other symptoms that we all only

know to well. They have been very reluctant to conduct any test that I

request or mention that I have read somewhere and just dismiss it. They

say that a diagnosis of fibromyalgia will be easier to get my disability on

than neurosarc anyway because there is more accessible information about

it. What is the connection between fibromyalgia and NS or is the fibro

just a symptom of the NS?

The stand-in rheumy I saw today, more or less said that 'you know you just

have to live with it and get yourself out of it' and a few other innuendos

that I took to mean well I don't really believe in this fibromyalgia stuff,

I think it's all psychological blah blah blah, and how pointless it is to

sit around feeling like crap and waiting for someone to hand us a magic

cure and make us feel better, but to decide you're going to beat it and

just push yourself through it. How I can possible push my tired, fatigued,

pain riddled body any more is just beyond comprehension. How can we ever

hope to move forward or feel better when we are told these things by those

who are supposed to be the experts?

Any way I wanted to ask out of personal interest, what is considered a low

dose of prednisone. I am taking 30mg a day now and have been instructed to

reduce it by 5mg per week till I get to 15mg per day then reduce by 2.5mg a

week till I get to 10mg a day then reduce by 2.5mg every 2 weeks till I get

to nil. This new dr mentioned a condition called steroid myopathy which is

the first I have ever heard of and said it is something that I will just

have to go through while the steroids are getting out of my system. Is

anyone familiar with this aspect of prednisone withdrawal.

Love

Toni

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.614 / Virus Database: 393 - Release Date: 5/03/2004

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

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]

Toni,

It sounds like the doctors are totally dismissing you and that isn't

fair. From what I have read involvement of the 7th cranial nerve is classic for

NS.

I don't think disability is easier to get with a diagnosis of

fibromyalgia because so many doctors don't believe it is a real disease.

I suspect that you won't be able to totally withdraw from the steroids

without becoming symptomatic, either seizures or something else. I take 10 mg

of pred a day and have been on it for 9 and 1/2 years. Withdrawal is no fun.

It is quite painful. I can never get below 10 mg and have any kind of life.

I figure at least 3 out of every 4 doctors I have seen are unable to

help me. They like nice tidy diseases like pneumonia that have a beginning, an

end, and an effective treatment in between.

Jane

[Guest guest]

Toni, My sentiments exactly you need someone that will be totally focused on

you and finding out what is causing your medical problems, whether it be NS

or some other neurological illness. It is not fair to just write you off

with oh its probably fibromyalgia. I will be praying for you and hoping

that you can find a doctor that actually knows his stuff. your friend in

Texas, Jeanna

-- An update on my much needed last venting post

Hi everyone,

I hope all of us are well and for those of us who aren't, then love and

healing thoughts to all of you for a speedy being of relative wellness to

return.

, thanks for all your kind words. I would really appreciate that

article on the dx of NS for my own interest also. Yes I am in Australia

and I would imagine our Social Security system is quite different to yours,

but thank you very much all the same.

I had to see my GP and go to the hospital for my check up today. I was

armed with all my bits of paper asking about more blood tests, liver enzyme

tests and a sputum test because of this persistent cough but they just

weren't interested and told me to forget about the NS. I didn't get to see

my regular rheumy as he was away conducting exams with new medical

students. My GP said that my regular rheumy has decided on a diagnosis of

fibromyalgia despite all the other symptoms I have had including my

seizure, brain lesion on the VII cranial nerve, my bout of bells palsy, my

fuzzy brain and total change in cognitive thinking and ability to function

as I did before I became ill and a million other symptoms that we all only

know to well. They have been very reluctant to conduct any test that I

request or mention that I have read somewhere and just dismiss it. They

say that a diagnosis of fibromyalgia will be easier to get my disability on

than neurosarc anyway because there is more accessible information about

it. What is the connection between fibromyalgia and NS or is the fibro

just a symptom of the NS?

The stand-in rheumy I saw today, more or less said that 'you know you just

have to live with it and get yourself out of it' and a few other innuendos

that I took to mean well I don't really believe in this fibromyalgia stuff,

I think it's all psychological blah blah blah, and how pointless it is to

sit around feeling like crap and waiting for someone to hand us a magic

cure and make us feel better, but to decide you're going to beat it and

just push yourself through it. How I can possible push my tired, fatigued,

pain riddled body any more is just beyond comprehension. How can we ever

hope to move forward or feel better when we are told these things by those

who are supposed to be the experts?

Any way I wanted to ask out of personal interest, what is considered a low

dose of prednisone. I am taking 30mg a day now and have been instructed to

reduce it by 5mg per week till I get to 15mg per day then reduce by 2.5mg a

week till I get to 10mg a day then reduce by 2.5mg every 2 weeks till I get

to nil. This new dr mentioned a condition called steroid myopathy which is

the first I have ever heard of and said it is something that I will just

have to go through while the steroids are getting out of my system. Is

anyone familiar with this aspect of prednisone withdrawal.

Love

Toni

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.614 / Virus Database: 393 - Release Date: 5/03/2004

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

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've read several places that 7th facial nerve palsy is the most common

presenting sign of neurosarc, most often on the left. I've had 2 7th nerve

palsies, both on the left. The first was blamed on a virus. The second

one was more severe, requiring speech therapy & electrostimulation. So

this isn't something to fool around with. Kick butt! Rose

Original Message:

-----------------

From: donstewblo@...

Date: Wed, 24 Mar 2004 16:39:49 EST

To: Neurosarcoidosis

Subject: Re: An update on my much needed last venting

post

Toni,

It sounds like the doctors are totally dismissing you and that isn't

fair. From what I have read involvement of the 7th cranial nerve is classic

for

NS.

I don't think disability is easier to get with a diagnosis of

fibromyalgia because so many doctors don't believe it is a real disease.

I suspect that you won't be able to totally withdraw from the

steroids

without becoming symptomatic, either seizures or something else. I take 10

mg

of pred a day and have been on it for 9 and 1/2 years. Withdrawal is no

fun.

It is quite painful. I can never get below 10 mg and have any kind of life.

I figure at least 3 out of every 4 doctors I have seen are unable to

help me. They like nice tidy diseases like pneumonia that have a beginning,

an

end, and an effective treatment in between.

Jane

[Guest guest]

Toni

I agree with everyone else. You need a decent doctor and believe me they are

hard to find.

The doctor that I normally see is 4 1/2 hours away and you usually have wait six

weeks to get in to see him. So anything that comes up in between I see local

docs some are understanding but not always knowledgeable but some make me feel

like I'm starting all over again. We all know that this is not in our head but

they can sure make me doubt myself all over again. I wish you good luck in your

search to find a doctor.

I'm on 30 mg. of prednisone but am now diabetic, have cataracts plus a chipmunk

face (minor). I'm afraid to go off of the prednisone. I've been on it at this

level for 1 1/2 years was on 40 mg. before. I've been a lot worse than I am

right now but I've also been a lot better.

Best wishes

Pat

An update on my much needed last venting post

Hi everyone,

I hope all of us are well and for those of us who aren't, then love and

healing thoughts to all of you for a speedy being of relative wellness to

return.

, thanks for all your kind words. I would really appreciate that

article on the dx of NS for my own interest also. Yes I am in Australia

and I would imagine our Social Security system is quite different to yours,

but thank you very much all the same.

I had to see my GP and go to the hospital for my check up today. I was

armed with all my bits of paper asking about more blood tests, liver enzyme

tests and a sputum test because of this persistent cough but they just

weren't interested and told me to forget about the NS. I didn't get to see

my regular rheumy as he was away conducting exams with new medical

students. My GP said that my regular rheumy has decided on a diagnosis of

fibromyalgia despite all the other symptoms I have had including my

seizure, brain lesion on the VII cranial nerve, my bout of bells palsy, my

fuzzy brain and total change in cognitive thinking and ability to function

as I did before I became ill and a million other symptoms that we all only

know to well. They have been very reluctant to conduct any test that I

request or mention that I have read somewhere and just dismiss it. They

say that a diagnosis of fibromyalgia will be easier to get my disability on

than neurosarc anyway because there is more accessible information about

it. What is the connection between fibromyalgia and NS or is the fibro

just a symptom of the NS?

The stand-in rheumy I saw today, more or less said that 'you know you just

have to live with it and get yourself out of it' and a few other innuendos

that I took to mean well I don't really believe in this fibromyalgia stuff,

I think it's all psychological blah blah blah, and how pointless it is to

sit around feeling like crap and waiting for someone to hand us a magic

cure and make us feel better, but to decide you're going to beat it and

just push yourself through it. How I can possible push my tired, fatigued,

pain riddled body any more is just beyond comprehension. How can we ever

hope to move forward or feel better when we are told these things by those

who are supposed to be the experts?

Any way I wanted to ask out of personal interest, what is considered a low

dose of prednisone. I am taking 30mg a day now and have been instructed to

reduce it by 5mg per week till I get to 15mg per day then reduce by 2.5mg a

week till I get to 10mg a day then reduce by 2.5mg every 2 weeks till I get

to nil. This new dr mentioned a condition called steroid myopathy which is

the first I have ever heard of and said it is something that I will just

have to go through while the steroids are getting out of my system. Is

anyone familiar with this aspect of prednisone withdrawal.

Love

Toni

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.614 / Virus Database: 393 - Release Date: 5/03/2004

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

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