Hi BeachSandAngel,
Boy, you have really been through it — as many of us mourn for what we’ve lost, we forget there are incredibly strong people out there like YOU who probably don’t even know what it feels like to feel “well”. Sending you a heart-felt (((hug))).
I am researching this overlap in conditions — there are more out there than you can imagine — I’m wondering if you have mast cell disease (or symptoms of it)? I had angioplasty for CCSVI, but the most help I got (besides the mast cell treatment) was Diamox to take pressure off of my brain. Do you have symptoms of high pressure (occipital headache going down your neck, ear aches, squishy ears, more symptoms with valsalva (straining),etc?
I do think that poor venous and/or CSF drainage is to blame for many of our symptoms and I know I was developing M.S. (my right side was dragging around an invisible toddler for one thing). Did you happen to look at my theory? I’m curious if treatment of your venous and CSF circulation may help you…
Thanks so much!