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Old 09-16-2008, 02:29 AM   #1 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2008
City: Martinsburg
State: WV
Country: US
Diagnosed: 00/0000
Posts: 4
Noid is on a distinguished road
Cool Here to learn. Need to know as much as I can.

Hello. It is a privelage to meet you all. Online I have gone by Noid for years online, but never thought in a million years that I would end up on so many medical forums, or this one to be honest. Well here I am.

I have a long story, but I will make it breif. I have already been diagnosed with mulitple sclerosis, and mostly on my spine. I'm currently taking rebif. I haven't talked to my neuro yet about this, nor do I expect a diagnosis from this site. I just need to learn.. you see.. my mother died a few years ago. After many years, I finally found that her final diagnosis was a form of sclerosis... but she passed away from cirhossis caused by it. It sounds silly that I don't know, but her diagnosis was bad, and she didn't expect to pass away as quickly as she did, and had never had the big talk with me.

So.. i got really sick. By the time I became sick.. my had been passed on since 99. I've lost my ability to walk.. and got .. some of it back.. but there are things my neruologist can't explain. One is the bi lateral loss of my legs and hands.. from pinky to middle now. The other is horrible swallowing and breathing problems. I have recently been hospitalized for asperation pneumonia. My bilatteral symptoms don't go away, but other ones do.. could i have both.. naa.

Well enough about me.. so far, I only have little ol multiple sclerosis..

Just one more thing. I had my genes tested as I thought I had another condition called HHT, which my mother was initially midagnosed with. I do have a SOD 1 mutation. At the time of the testing, I wasn't presenting any limb paralysis yet. The papers arrived today. Don't know if I just have crazy ms, or, if I face my mum's fate.

Either way, I need to learn what I can, for myself, and in honour of my mum. I never appreciated how she felt till I got sick myself.

Glad to be here and see the courage all of you here have. You are a great group of people.
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