MG + What

[FBMOM]

I have Myasthenia Gravis and receiving treatment for over 1 year.  I recieve IVIG treatments every 4 weeks and currently on Predisone.  But my problem is some of my other symptoms are not related to MG.  I have problems walking, my giat is wide, I have  a Babinski reflex, I have horrible involuntary muscle movements in my legs at night and problems with disfunctional bowel and bladder problems.  My doctor ran another blood test and it showed twice a very high fatty acid level or VLCFA.  But DNA test did not show ALD.  My doctor started me on Zanaflex for the leg muscle problems when she thought I had ALD.  The medicine I have been taking is like a miricle to me and I can now sleep at night.  My legs are very stiff and a little sore in the morning and late at night, but much better than they were.  Does anyone with MG have any of these symptoms?  My doctor thinks now that I have 2 autoimmune disorders but we are not sure of what the second one is.  Can anyone help?

[rumpled]

I cannot get treatment until I get a diagnosis and that is eluding me as yet.
I get to go for more swallowing tests soon - yippee... not. The next one is a camera down my nose to watch me swallow... sounds fun...

[FBMOM]

I know the Predisone is horrible and I hope to be off of it soon.  I was just put on Zanaflex for involuntary muscle movements and it has been a mircle drug for me.  I do not know if it would help your with any of your muscle problems but you might want to ask. Good Luck.  

[rumpled]

Are they going to move on to cellcept and others like that now?

Pred is evil. I hate steroids and I have to take them daily to live as my adrenals were taken out to *cure* the Cushing's. Something I could not convince the &(*$#@$*% residents as I was having the IVIG and a fever of 103.5 and they kept saying I was not having an adrenal crisis. Dude, when you do not have adrenals, everything is an adrenal crisis, but what do I know,I am only dying here... after that they decided no more IVIG. Ever.

Most of my symptoms are upper body - frozen shoulders (they tell me that is not a symptom), weak shoulders, swallowing issues, find it hard to stand, speak etc. but my eyes are fine except they cross easy and when I get tired, I see double, but that has been since I was a kid.

I read about the ALD... sounds awful - I hope you do not have it.

[FBMOM]

I also tried mestinon and it really did not help that much.  I too had the meningitis the first time I had the IVIG.  Then I went on Predisone and gained almost 30lb.  The Doctors are trying to get me off the Predisone and I tried the IVIG on a lower dose and doing very well.  Women can have ALD be a carrier and have symptoms.  I have lower body symptoms simular to MS.  I think with ALD in males it does cause the adrenal problems.  Good Luck with your problems.  

[rumpled]

I was diagnosed - but I was not anti-body positive, so I had a muscle biopsy to check for it and other diseases. It may tell you if you have other diseases.
Then I was un-diagnosed. I still have symptoms of something, but now I do not have a name, or a treatment.
I tried mestinon (no effect but side effects) IVIG (aseptic meningitis)... I cannot do steroids due to a history of Cushing's and that I have no adrenals now.
I was asking about the salt since they said most with ALD had adrenal problems but I think that was most... er... males... my bad.
I do know that having more than one auto-immune disease is pretty common. I have a bunch.

[FBMOM]

Yes I did test positve for MG.  I have not had a muscle biopsy.  What would that be for?  I do not have a craving for salt.  Thanks for the web address.  I will look up some more info.  
FBMOM

[rumpled]

Have you had a muscle biopsy?

I looked up adrenoleukodystrophy (needed a primer, yikes)...
Are you having cravings for salt because what I read mentioned it can also shut down the adrenals?
http://www.x-ald.nl/biochemistry.htm is the site I found.

What other tests have you had? Are you anti-body positive for MG?