I also was originally diagnosed as having CIDP , but a popped appendix put me in the hospital . My stay in the hospital put me under the scrutiny of more experienced neurologists . the diagnosis became LEMS , I have been taking DAP and have been doing much better .
I have not been been seeing double but for the past several months I,ve noticed some reluctance of my left eye to open and a certain amount of soreness of the eye untill I have blinked a couple dozen times . Is the IVEG a transfusion of anti-bodies .
hope you are well , and we can chat more later.
Quote:
Originally Posted by bny806
hey everyone!!! HOpe everyone has been well! It's been a while since I have been on here.. I got a diagnosis of atypical CIDP/inflammatory polyneuropathy, but I don't have the typical symptoms, so I question the diagnosis sometimes.. well a lot of times!! But after 12 + neuros were all stumped.. at least I'm getting treatment and at times seem much better! When I was admitted into the hospital, I could barely move, breath etc!
the 2nd IVIG worked A M A Z I N G!!! I almost felt like the old, and better version, of myself! it was GREAT>.. however I got a cold and fever and things worsened.. then the next IVIG (every 3 weeks) didnt' work at all.. last one worked well again, but not like the 2nd one.. what a roller coaster!!!
Anyhow I had a question.. my vision has been "off" since this whole thing started... I have said it was double vision, but it wastn' exactly double.. just wierd!! Well now it has worsened and is obvious - it is double, or shadowed/ghost image one on top of the other..
My question is, with MG do you have diplopia when you have one eye closed? or is it only with both open? I have double vision mostly in one eye, a little in the other.. the images are one on top of another- is MG diplopia typically vertical or horizontal? I plan on making an appointment with a neuroopthamologist this week. I saw a regular suburban opth months ago and they said everything looked fine..
The scarey thing is I now have muscle atrophy in the hands.. so I fear my original fear- ALS.. though 3 emgs, and 12 neuros say absolutely not.. I hoep they are right! I have ptsd from my first dr appointment! Also my weakness has become more obvious as to where it is - mostly in the hips and facial muscles.. which from what i have read the proximal joints go against ALS, i think!
Any advice is greatly appreciated, yall are just a wonderful support group, and I thank you for all of your support!
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