We have ruled out MG, but not LEMS. I think my symptoms almost perfectly match up with LEMS & Autoimmune Encephalitis. I still think that I have an unidentified antibody causing encephalitis.
In my case, we easily ruled out MG but we also could not rule out LEMS b/c I had the calcium channel (LEMS) autoantibody and many of the symptoms (although I was not a perfect match but LEMS seems to present in many different ways in different people). And in my case, I don't have any type of encephalitis.
I know I have asked you this a million times but have you been tested for the calcium channel (LEMS) autoantibodies (both the P/Q and N-type) and for anti-NMDA Abs?
(Still don't know why low dose IVIG caused me to go into this flare when High Dose put me in remission, but it reminds me of what @SK2018 experienced with IVIG)
It makes sense that high-dose IVIG put you into remission if your issues are auto-immune (vs. low dose IVIG would not be a high enough dose to affect your symptoms). But why low dose put you into a flare, I don't understand (b/c I just don't know enough about it).
And re: your PM, I am happy to help with what you asked me, I am just really behind with PM's as usual and got my Rituximab infusion on Fri and just starting to catch up with things today.
Dr. Chheda has recommended rituxan if I cant handle the IVIG anymore, so before I go on with that I am going to see Dr. Schofield in Colorado to see if there are any other recommendations and if she has any experience with other immune suppressants (Imuran, Cellcept).
That is amazing that you are going to see Dr. Schofield in Colorado! I think I told you that I e-mailed her (at least a year ago, maybe more?) and she replied and was very kind and helpful. She had a 2+ year waiting list at that point but she told me that she felt I was on the right track with my treatment plan and the only thing she might do differently (at that time) was to increase my IVIG dose even higher (to a 4-day cycle vs. a 3-day cycle) but I was already doing the highest dose that I could humanly tolerate so it was not possible.
Imuran and Cellcept scare me (b/c they can really wipe out your entire immune system vs. something like Rituximab that only targets the B cells and leaves everything else intact). However, if I were still in the physical state that I was in back in 2015 & 2016, and IVIG & Rituximab had not worked for me, I definitely would have tried anything (that logically had a chance) to help alleviate my suffering at that time. When do you go to Colorado?!!