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!

My neuro has diagnosed me with seronegative MG and thinks maybe I also have LEMS because I have autonomic dysfunction. I am wondering too, I mean, if you are getting hit from both sides of the neuromuscular junction, could that be what is causing my situation to be so extremely difficult? There are major swings in functioning, despite IVIg every 2 weeks.

I also have dry mouth and eyes but it might be Sjogrens?? So complicated!

artchick- my rheumy initially thought I had neurologic sjogrens... not sure if she still does or not (follow up in a week). my autoimmune markers are always up.. I also have days, which are more rare now thank goodness and usually after pushing myself too far or being sick with a cold/cough etc where I can barely put one foot in front of each other, breathe, or snarl a smile.. and then other days where I am satisfactory or pretty darn good! I was freaked out about 2 months ago about my swallowing and nasal voice - they were awful, I couldn't hardly take pills, eating and drinking were all hard, now swallowing is back to normal- after a round of IVIG... it is all so strange, that is for sure!!! Looking in the mirror is always strange for me when my IVIG wears off, as I just look frowny, tired and just not the same as 2 years ago, with my saggy face!

My first IVIG gave me just a few days of improvement 30%. Now I am back to my old achy self. Am wondering if IVIG is the right thing for me.

natops- glad you felt some effect from it, but sorry it didn't last long!
Was this your first round of IVIG?
I had my initial loading dose in the hospital and only had mild improvement.. I was defintely better, but it was mild enough that I wondered if it was just placebo effect.. it wasn't until the 2nd round that on the 3rd day or so afterwards I woke up a changed person - like my old self! it lasted about 10 days until I felt it all start taking over me again..
The neuros said a lot of people take a few rounds before noticing a difference .. have they talked about DAP as well ? I hear the combo of IVIG and DAP is what really works for LEMS..
Do you have facial symptoms? ptosis and swallowing/speech issues at all?
Good luck!!!

Ok, I googled it. DAP.
Dog Appeasing Pheromone
Draw a Person Test
Download Accelerator Plus
I don't think I found the right one. What is DAP?

haha, yea those probably wouldn't help us out too much!


here is the full name 3,4-Diaminopyridine (3,4-DAP) I don't know a ton about it.. i'm sure if you goggled lambert eaton and DAP more info is out there..From what I gather it is like mestion is for MG, but for LEMS (from what little I know, mestion isn't usually much of a help with LEMS).. so most people do IVIG +DAP or just DAP.. I believe steroids sometimes as well.. I want to give it a try and see what happens, but I haven't researched it enough to know the possible side effects

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.