Hello everyone!! It's been a while since I"ve been on here.. I have just had to get on with life and try to just live as best I can with everything going on.. I was run down thinking about it all of the time!!! I have a current diagnosis as CIDP.. but it is atypical.. I do have some numbness/tingling, but only at times.. Anyhow.. I can't stop thinking about MG as a possibiltiy with these paresthesias as maybe just a coincedence?? My weakness ia mostly proximal (hips and shoulders) and bulbar/face when tired. My hands used to be weak (jelly fingers), but the IVIG has cured that = thank goodness!


My question is, I am getting IVIG every 2 weeks now.. It has been working great _UNLESS i get sick with a cold/strep etc.. my whole body gets weak.. I'm like a lump of jello.. well hormones have always seemed to affect this all (a few days before menses - sorry tmi I know- I get weak and the first few days of REALLY weak) my eyelids really droop- my right worse than my left, it is SOO noticable! IVIG fixes this within 48 hours.. but it really is hormonal/fatigue and sickness exacerbated.. I do have some diffuse muscle wasting and a triple furrowed tongue too (however my musk test was negative.. but I have always tested negative for antibodies, even with known past exposures, so i'm not sure how reliable it all is)..
So I didn't know if it was MG, should I still be having ANY sypmtoms if I am getting IVIG that frequentlY?? I feel like most MGers only get it every 6 weeks or less and it lasts a lot longer.. They are talking about putting me on immurane or cellcept as well, but since IVIG is maintaining me most of the time We are going to wait for now Thanks in advance for any help and hope everyone is doing well! Yall are so great!