[jchadnixon]

I was diagnosed in March and now know I have had this disease for years. This year has been a nightmare ... and really don't see it changing anytime soon. Are there people out there who become completely disabled by this disease? I can't do much of anything any more. It is very depressing and frustrating. Unfortunately for me I had a terrible reaction to Mestinon in the beginning and the Neuro's won't give it to me again. I actually coded while in the ICU after completing my first PLEX and recieving Mestinon. I coded a second time after being started back on the Mestinon again. I have been in a pretty much constant state of crisis since February ... more days in the hospital ICU than out and had to have the breathing tube 3 different times. I am currently on a high dose of Pred 60 mg per day (down from 100 mg per day) and can not stand it much longer because of the side effects. I am also taking Imuran (Spelling?) and recently got approved by the insurance company to do IVIG at home every 3 weeks. Have had 5 rounds of PLEX and 4 rounds of IVIG since February ... IVIG seems to be helping me not experience the "crashes" but am constantly battling the swallowing, vision, eyelids and leg weakness. Recently I have begun to experience Hand and Foot "locking up" It is much like a muscle cramps ... but not. Things just lock up solid and I have to work to get them released. Have lots of good support and great Doctors at the University of Kansas Hospital ... but I am looking at some significant life changes here and wondering if they are forever?

[AnnieB3]

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