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Old 11-19-2014, 03:30 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Hi, and welcome to the forum!

I'm really sorry that you have not stabilized yet. You've been through so much. It's not fun to be in the hospital!

You should know that some MG patients get worse on a high dose of Pred before they get better. When did you start taking it?

Can you say how you were diagnosed with MG? I'm wondering because some patients are diagnosed with MG when what they have is LEMS (slightly different than MG with a risk of small cell lung cancer) or CMS (genetic, not autoimmune).

http://quest.mda.org/article/congeni...enic-syndromes

Did you have positive MuSK antibodies?

MG behaves differently in everyone. And they're starting to realize that there are probably "subgroups" in MG (such as MuSK and others).

I wish I could give you an answer about how you will do on treatments, but I can't. I can tell you that some people do very well on them. Others muddle along and can still work. People, such as myself, are disabled and can't work. It really runs the spectrum of symptom-free to drugged up.

Did they check your thymus for a thymoma? Sometimes that can make MG worse.

It might be that you are an MGer who will take more time to get stable. And that means you need to rest/sleep as much as you can, and do everything else you can for your overall health to keep the immune system happy.

The hand and foot locking up could also mean electrolyte imbalances (i.e., potassium) or a B12 deficiency. Some patients have more than one thing going on. Have they checked your thyroid?

Are you on calcium and vitamin D (due to Pred)? What about any omegas such as flax, walnuts, fish, etc (eating or pills)? Pred is an anti-prostaglandin and so you need to counter that with eating good prostaglandins.

Prednisone is a tough drug. Be careful that they don't try to drop you to 40 one day and then zero the next. That could cause an adrenal crisis and put you into another MG crisis. Symptoms of that are increased weakness, dizziness, sweating, etc.

I'm truly sorry that you are having such a hard time. I hope things will get better and that you can live a somewhat normal life with MG!

Annie

Last edited by AnnieB3; 11-20-2014 at 09:38 AM.
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