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Old 03-19-2009, 08:11 PM #15
ras1256 ras1256 is offline
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
Exclamation You need a rheumatologists' opinion.

Hey Kate,

I'm sorry these docs are piling more frustration on you!

My old neuro, whom I felt was generally pretty good on MG and such, kind of jumped to the fibromyalgia dx on me about my pain. I knew some people with fibro, though, and disagreed so off to the rheumie I went.

Fibromyalgia is actually one of their diseases, and it took her all of 5 minutes to say NO - not fibro. The next possible explain for my pain and other additional problems was leftover problems from a cord compression.

This new neuro, however, believes I have one of the polyneuropathies - and some of them are seen also with MG and are autoimmune conditions as well. There are so many different ones caused from all kinds of different things - some B12, Vit E and or Copper deficiences that are reasonably easy to treat.

The one we're looking at on me, however, is a chronic, progressive form that could have been possibly halted had it been caught early. Since I've had it for at least 14 YEARS! now though, it looks like I have some permanent damage to nerves and muscle wasting.

Please ask to see a rheumatologist to either rule out or confirm the fibro, and if it's ruled out, don't let them just throw you into some classification.
It could be something that with early identification you could halt it!

Take care, keep us updated.


Quote:
Originally Posted by redtail View Post
I have just recently been back to my gp, because the pain was getting bad, and he informed me that the pain was due to lack of excercise, the muscles contracting and pulling on the joints!!(he did give me a prescription for pain killers, Im surprised he didn't send me off to see the psycologist as well, you know, its all in your head dear!!!!)he didn't even ask me if I excersised or how bad the pain was??, So has sent me off to the physio, whom I see tomorrow, shes a loverly lady, and Im sure will help me, and will tell me if she thinks its not what the doctor thinks it is. Sorry for venting
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