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!!!

Hi Nicole and to the group. What a terrible time you've had and a scary one too. Having your doctor say it's "only PTC" and not MS, couldn't have been very reassuring for you at all, especially after going through all that you have, and for so long.

Has your doctor not even touched on the cause of these lesions, or given you any idea of what is to be done about them? I'm sure you are desperate to know why they are there and what they mean. So although you have a diagnosis I'm sure you might feel you still haven't got the answers you needed.

I hope your LP goes well today, and that after it you will have more answers to your questions. Having all the information you need makes it a lot easier to deal with what is happening to you.

I do understand what you mean about your quality of life being affected so badly, and the frustration that comes with it. Now your doctor has given you a definite diagnosis of PTC, then hopefully she will put you on the correct medication for it, as well as more effective pain relief. Once she does that, then in time things should start to improve, and you can gradually build up to a better life.

No apology is necessary for ranting or anything else, this is why we're here for you. So feel free to do so whenever you need to, we totally understand

Heidi

Hi Nicole, you poor thing you really have had 10 years of it. Rant away thats what this forum is for ... to make you feel better and discharge all that pent up feeling.

Hope your LP went well for you today and you get some relief.

Thank You so much, It feels better to let off steam where you know people are going through it too. My poor family just don't get it because no matter how bad the pain, mom still looks fine, I fake it well ! I appreciate everything you do to make newbies like me know we are welcome and understood.