Hi, Lauri. Welcome.

I'm not doing well right now but will post a little. Did your docs do the Acetylcholine Receptor antibody tests (binding, blocking and modulating)? Since you are immunousuppressed, they may not come back positive. Who you really need is an MG expert to evaluate your situation. A SFEMG may be negative too while on those drugs. Just like they make lupus "disappear" they will make signs of MG disappear too.

I'm sorry your lupus is so bad. The kidney involvement is so hard to handle. I don't have lupus but volunteered to the local organization for ten years. It's a horrid disease. I do know of a few people who have had lupus and MG.

Have you been to either of these two websites?

www.myasthenia.org
www.mdausa.org

Some drugs, even some for lupus, can be relatively contraindicated in MG. Do a search here for that topic.

Mestinon is a good drug for most people with MG. It is not easy to determine what the best dose amount and how often to take it right away. With Mestinon, if you get too much of it, you can get weaker. Same with not enough! Some docs start with lower dose amounts and slowly increase. You really need an expert to guide you through all of this.

It's pretty tough to have a new disease - another learning curve. One, make sure you have it. Two, get an expert to help you deal with it (by way of a 2nd opinion).

I hope you can figure out what works for you. Hang in there.

Annie

Have they checked your thyroid and electrolytes lately? B12?