Reply To: No official diagnosis, but doc is convinced. Starting IVIG
You mention numbness in your limbs, burning in your feet and cobwebs everywhere. I’d ask about an EMG. I’ve also heard of docs doing EMGs on the face, although that sounds rather unpleasant!
I know a lot of people are on ongoing oral steroids and monthly IV steroids. I’ve only heard the limit of 3 times a year related to something like a back injection. This forum is rather small, perhaps you could also post on one of the Facebook forums with 1000s of members and see what they say?
If your financial situation allows, it may be worth it to self-pay to see a second opinion neurologist, ideally one affiliated with a “Center of Excellence” designation with this foundation.