[Delia Wilson Lunsford]

I was initially diagnosed by a neurologist at my first appt with him after years of symptoms of leg weakness. My eyes were drooping badly by the time I saw him. Serionegative – then had a flare within the month. I had stopped my mj tincture once I got the diagnosis because I couldn’t find any info. The best forum is a facebook group that does not allow discussion of cannabis. I’m back on the mj and glad I live in the state of Maine where it’s all legal.

No cannabis research is truly hurting us.

Mestinon inflamed my stomach badly and I’ve had to quit it. Neuro hopefully next week will do something more. I thought he was starting approval for IVIG but turns out now we have to discuss it.

I was fortunate that I ended up with a great neuro diagnostician. but it wasn’t on purpose. He also does autonomic testing and I have Ehlers-Danlos. POTS is very common for us but I also was sure I didn’t have it. So it was a hail mary and I’m diagnosed after spending years of problems with my legs and fatigue from walking.

And with no treatment. Thanks for all the responses about IVIG and Plex. You haven’t given me some hope.