Hi Everyone, my name is Nicole and I'm from Ohio(US) I am a newly diagnosed IIH
member but long time sufferer. I have been to the doctors (many doctors) for over 10 years now and to kind of make a long story short. Last year, the weekend of father's day my blood pressure shot up to astronomical proportions and my left side and face went numb, rapid eye movements, throwing up, headache (like normal) .
I thought I was having a stroke or heart attack, 1 MRI later they found a lesion and now I cave an uncontrollable upper body twitch (not all the time) they thought I had MS, no stroke or heart attack. they had no clue. After I went home blood pressure went way low then would fluctuate high and low 75/48 (that was right after a 2 mile walk) to 195/110 my normal is 1oos/60s. forward 2 horrible neuros and opthos later...I now have 3 lesions,spinal fluid open pressure is a 34 BUT I get a wonderful LP tomorrow.
Last week neuro came into my room put her hands in the air and said You DON'T have MS it's only PTC Now you can loose weight! FYI I wasn't heavy when all this started happening,
I'm still not sure about the lesions I went from 1 to 3 tn less than 6 months, but since had not changed in a month and a half she said it couldn't be MS. At this Point she could have told me my head was falling off and I wouldn't care, NO PAIN MED WORKS, been through A LOT of them!!
The pain is still there and my quality of life (for me, my opinion only) goes down the tubes. I am on my way to hospital to get MRA today just had to rant, SORRY SO LONG!!!