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02-02-2010, 10:41 AM | #1 | ||
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New Member
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Hi to all. I am diagnosed with SPMS since 2004....ON MY BIRTHDAY..oh happy day! Since then, I've enrolled in the "hyc" clinical trials at Stony Brook on LI ,NY. I am convinced that the disappearance of that terrible fatigue is do to that regimen. It was tough!!!. I think they calll it revimmune now but I didn't get the stem cell component [it wasn't part of the protocol then].
That aside, I am elated about the CCSVI theory now proposed. I as convinced there's something to this. Interestingly, my first symptoms were in my legs after varicose vein surgery, followed by a bout of Bells palsy {EBV!!!]and a previous bout of "Shingles" [Herpes Zoster], across my midriff . I've registered to enroll in the U of B trials to test for venous malformations and am anxiously awaiting their response.I"ve also contacted the vascular surgeons and interventional radiologists in my area to find out if they're doing anything connected with this theory [no responses yet]. If not, I'm going to make some noise with my own GP and Neuro about getting tested on my own. We'll see.... |
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"Thanks for this!" says: | (Broken Wings) (02-02-2010) |
02-02-2010, 12:48 PM | #2 | |||
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Senior Member
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Welcome to NT You are trying the newest things. Keep us posted. Hope you find relief.
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(Broken Wings) . . |
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02-02-2010, 12:50 PM | #3 | |||
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Welcome to NT
MS is no fun. You will find lots of support here. You've probably found the MS forum but here's the link just in case. http://neurotalk.psychcentral.com/forum17.html We also have other forums here that are interesting too. Read down and see if you can find something that interests you. Look for to having you around the board.
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(Broken Wings) . . |
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02-02-2010, 05:04 PM | #4 | |||
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Grand Magnate
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hi dave,
i'm judy. congratulations on your marriage. i know you've found a great place for info and support. looking forward to more of your posts.
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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