Natops- wow, you sound so much like me!!! I have had a pain in the butt - literally since this all started!!!! that is probably my weakest area, shoulders and well everything else, including face is a close second! I do have ptosis and at times swallowing difficulty too.. I Have dry eyes, dry mouth (it actually bleeds at times from things like brushing my teeth - ew!), but at the same time it isn't that dry, just my tongue is wierd I feel like.. metallic taste as well.. basically every single muscle is affected.. I was tested for POTS... they said technically I was negative as my BP didnt drop enough - however my heart rate sky rocketed to 150's when tilted and with forceful breaths .... all they could say was- "Strange" gee thanks! My pupils are also affected - sluggish and dilated more than norm, especially after concentrating on something up close for a bit.. I do almost pass out everytime I stand up..fun!
My emg's (many of them) are negative, but I have been getting IVIG for a year now (every 2 weeks).. it was absolutely AMAZING!!! the 1st treatment,, i thought was just placebo effect in my mind, thought I could do things I hadn't been able to do for months- I just wrote it off.. the 2nd IVIG was a miracle.. I was basicaly back to normal! Now my IVIG tends to wear off around day 10, and sometimes I make it to the full 2 week mark... I got my hands, swallowing and breathing, and well everything back to normal, and now it just fluctuates depending how bad I am pushing myself...
Good luck with the IVIG!!!! Let me know if you have any questions about it!

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

Just saw this when I was looking for stuff concerning Lems. I tested positive for Lems in January, but tested negative several months earlier.
Mestinon is helpful for my Lems, but I am probably going to be starting Dap soon.
If you have any questions about Lems in my experience, I would be more than happy to answer them.

Thanks so much Limpy!! I sent you a private message a week or so ago with more questions haha - sorry I have so many!!! Did you get that? I just had IVIG so it kicked in and I'm feeling so much better.. though I get freaked out from my breathing before it kicks in.. and sometimes it feels like my pinky fingers just don't work quite right! Ever have this?

I don't think I got your message, but probably didn't know it was there. I will go look. Ivig did not benefit me that I could tell. High dose prednisone really made me bad. Plasmapheresis has been the most beneficial so far. When my hands are weak, it is not just the pinky fingers. I cannot grasp anything.

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?