Thanks so much!!! Yea my entire hands/well body, gets limp spaghetti noodle on me when my IVIG starts wearing out.. but my pinkys just seem like they have trigger finger for some reason.. my others dont' feel that way.. maybe it is only trigger finger, and that's it.. it's hard to separate whats symptoms of this thing I have going on, verses whats a part of it all!?! when is your appointment? I hope they get your DAP and it works well!

Yes, I have LEMS & I need answers to my questions. This is rare & too many isn't sure how to treat it. I am so in pain & depress from it!

There is a closed group on Facebook for people with Lems. You can get a lot of answers there.

ask your neurologist about DAP (diaminopyridine) if your neurologist isn't familiar with this medicine perhaps you can get a referal to a different doctor.i've been taking DAP for over three years and the difference is great.good luck!

I have been diagnosis with MG Jan 2014 standard treatment Mestinon, IVIG 3 times so far. Called my doc three weeks ago told him I was crashing he would not do anything so I hunted another doc lucky enough to fine one went to him Friday May 30 2014 crashed Sunday June 1st 2014 could not get up. Went to hospital stayed 5 days took ivig started prednisone 60 MG a day. I have talked to him about a maintenance program (the old doc) or remove my thymus but he says no to all. I am 68 years old he said it too late in life, maybe I don't know but thinking of doing it anyway. Need help advise any similar experience out there. New doc put me on 80 MG a day prednisone today is my 9th day of prednisone and is my weakest period I have read.
Question any older men like me with thymus remove?
Any experience with a program called Sub Q?

Eddie, I am curious to what medications they put you on and what type of autonomic symptoms you have. I have been diagnosed with MG (double sero negative, positive SFEMG) but have another autoimmune disease unidentified. I have a lot of autonomic symptoms, chronic diarrhea and profuse sweating and extreme intolerance to even room temperature. I like it very cold. these symptoms are reduced with prednisone. I am headed down to John Hopkins in 6 weeks. I hope they can fix this other autoimmune issue now that my MG is stable.


thanks
kathie