Originally Posted by lucy101

well... that's what he said he would diagnose if I had ever actually lived/travelled in Africa or India etc... but I have never travelled outside Europe and Canada and the US and the last known case in the UK was in 1925 apparently.

So... now he is stumped... did a blood test to check Lyme but he is pretty certain it isn't that either.

He told me he couldn't find any demylination or axonal damage.. but I also heard him whisper to the younger doctor who was sitting in that he wasn't sure if it was CNS of PNS.. or both together. I only had full spine and brain MRI with/without contrast last summer so he feels there is no point doing them again now. He said to me that he had ruled out 99.9% of things.

I am pretty fed up as now I guess I have to get all my records from the hospital (which is the top neuro hospital here) and do masses of research... and maybe find a new doctor in the US. The neuro today just said that he couldn't help, and he would see me in a year and hopes that it doesn't progress too much in that period... which I fear it will... as it already is.

I got a few more details from the exam: the left ADM weak at 4/5, Slightly depressed reflexes supinator triceps and ankles, dropped an isihara plate on right eye, one palpable nerve on right elbow.

Just adding that if it rings any bells for any of you with anything else it could be....