I posted many times at the old board, as Footprints, so you may or may not remember me from then. I started having seizures over four years ago, a month and a half after losing my balance and control of eye movement; a month after my first hospitalization for MS-like symptoms that were never confirmed as anything. Throughout all this time, I've never had a reason for any of it. Nocturnal, catamenial seizures is my main remaining problem, although I'm on so many meds, who knows what I'd be like without them. Well, I may be finding out because, after I moved recently, my new endocrinologist wants to mess with everything (don't you love it when they second guess something that is working?). So, she changed my thyroid medication and strongly suggested (through use of the evil eye and lecture) that I shouldn't be on progesterone for my brain that had been prescribed by my GYN.

I went off the progesterone since I'd started my period...and I've been having seizures nightly! Verrrryyy scary. They wake me up with a spin and the aura; I try fighting it but have ended up taking xanax every time, after the shaking starts and I realize I've lost the battle (I know, why not take it before going to bed? I don't want to be dependent upon this drug is why!). So, feeling neurologically unstable, I started going through all my old medical records (I received a copy of everything when I moved, and I kept a copy for myself!) and came across some things that sent me to the web......and I found mention of a "rare" disease called Hashimoto's Encephalopathy!

It sounds sooo much like my condition! Three years ago, my endo measured my thyroid peroxidase antibodies and they were very elevated (I have Hashimoto's thyroiditis, which is the cause of my hypothyroidism). I'm telling you here in case it could help anyone else. When I was first hospitalized, they thought I had MS, but never found any support for that diagnosis.....but high dose steroids treated my symptoms. Steroids are the primary treatment for Hashmito's Encephalopathy (HE)! I am on cortef, a replacement steroid for adrenal insufficiency. The one time I tried going off it, my eyes started to go cross-eyed again (diagnosed as 6th nerve palsy four years ago, but treated with the high dose steroids from the hospital), which improved when I went back on the cortef. Now I'm off the progesterone, and am having flashes of neurological symptoms again (dizzy spells, seizures).

Thought I would mention it here in case anyone else might find it worth looking into. I need to find someone familiar with it because it sounds like most docs know nothing about it, as it is considered "rare".