[Footprints]

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".

[Ellie]

This may sound weird, but I will share what my doctor friends told me.

A friend of mine is in a long line of doctors in his family; they are nice, but do admit when patients research online they worry that they may 'force' symptoms on themselves. It leaves those who really have them being pre-judged. I've told him some of my theories about myself and my condition. This is what he said:

Investigate rare conditions and write down every symptom you have that are associated with them (like a checklist) and then find the nearest school of medicine or look for what he calls a 'newbie' doctor. He said find someone who has this fresh in their brains or people who have the drive to diagnose something rare. He said to bring your checklist, medical records and a body-chart.

I have the body chart posted in the information sticky. This lets them know each sensation you have. Print, color and date your 'body charts'

Hope this helps!!

[Footprints]

Thanks for your info. It makes perfect sense. I spent all last week putting together my "Medical Binder". When I moved, I got a copy of my medical records, and it was fascinating going through them because it documents stuff I'd even forgotten that could be of importance. And since I had been seeing so many different doctors (neuro, endo, family doc, plus hospital stays and consults), no one doc knows everything about me. So I am now going to just take my binder with me so that I can point to the records that I'm discussing with the docs.