Thanks for letting us know how you're doing!

Wow, I feel like an idiot. Although I didn't know about the increase to 90 mg! Did you write it and I missed it? I'll have to reread everything!

You had a classic cholinergic crisis. And the "waves" of weakness were due to that! Too much acetylcholine instead of not enough. They might've been too scared to take you off of it, because you were so weak.

For example, Mestinon wears off. You take it. It doesn't kick in for about a half an hour. Then it is active for about two hours. Then it wears off 2-1/2 hours after you take it. Now that's a roller coaster ride courtesy of a drug!

That's why, during a crisis, doctors will often take away the Mestinon at first to see if it's a cholinergic crisis versus a myasthenic crisis.

I have to disagree, however, with the view that MG doesn't fluctuate that much. I can be okay, and then crash an hour later. It all depends upon what I've done that day, the day before, and the day before that! I get what I refer to as "two day payback." My MG always has this "build up" effect after going out and running errands two days afterwards.

They couldn't fully evaluate an endo issue while you were on steroids (or days later). I would followup with one after you are feeling much better.

Have you ever noticed a drop in energy (or a rise) after eating high potassium foods, such as bananas, potatoes, etc.?

Another thing you might try is to have both vitamin D and calcium three times a day. They make chewable kids calcium that is lower in dose. Calcium can help the acetylcholine process (look up channelopathy). Besides, many people are deficient in D. Have you had yours tested? Do you take daily calcium?

The difference between experienced MG doctors and ones who don't know much can be like night and day. It sounds as though you were evaluated enough for them to know you have MG!

There are so many seroneg MGers, and they keep discovering new antibodies.

One thing they don't often discuss is that there are circulating antibodies and tissue bound ones. Some MGers have antibodies show up later in the disease process. Antibody levels fluctuate, as they do in any autoimmune disease, and that doesn't mean someone doesn't have a disease.

Only LEMS and a CMS act like MG. Meaning that there are few diseases with fluctuating muscle weakness, such as what you have. And MG is a clinical diagnosis that is backed up with tests, because there are so many variables in diagnosing MG. And while there are classic MG symptoms, such as ptosis, there is not a classic MG patient presentation. Yes, fluctuating weakness is the hallmark of MG, but, beyond that, we all have different "sub-types" of MG. Some people have worse neck issues, while others have weaker breathing. Some MG patients have a mild MG and others, unfortunately, have "brittle" MG, where it doesn't respond well to any meds.

I really hope you continue to get better and never have to go through all of this again!!

I'll bet your family wishes for that, too!


Annie

Rockenmama, I'm so sorry that you are wheelchair bound! Do you have a good support group? I hope your docs have you on a regimen now that will get you back to walking and doing! How frustrating MG can be. I dread getting worse.