thread for more progressive forms of MS t share support/info

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

thread for more progressive forms of MS t share support/info

Postby aliyalex » Thu Jan 06, 2011 10:06 am

i have 2dary progressive form and would like a place to share experiences, support and information through liberation. this can be a very lonely disease and there are difficult challenges.

i'd like to know better some pwms who share similar challenges and successes on this CCSVI path. anyone else?
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Postby aliyalex » Thu Jan 06, 2011 10:59 am

i'll start by sharing that i was diagnosed in 2004. i refused DMDs as it didn't make sense to suppress my immune system. i guess i'll never know if i'd have been part of the 30 percent that may be helped.

i am non ambulatory now and had venoplastty in sept. i saw slow improvement afteer 90 percent blockages in ijvs and a faulty valve in azygous. the balloons were 8-12 mm that were used.

i have follow up in brooklyn next month to see if more aggressive treatment will help.

glad to be part of discovery and glad many are being treated early. aliyah
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Postby Donnchadh » Thu Jan 06, 2011 11:56 am

I am progressive "MS" for twenty years now. I trace its start to a very bad ladder accident; before that I was fine.

I just had my 3rd procedure 10 days ago and am gradually getting better day by day.

Did you ever have an accident?

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby aliyalex » Thu Jan 06, 2011 12:15 pm

that is very encouraging.

10 procedures? 10 venoplasties? did you restenose or just keep opening the flow? (or both?)

i guess i am on my 3rd procedure.
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Postby Donnchadh » Thu Jan 06, 2011 12:52 pm

3 procedures total. One in March (great initial result, but re-stenosis)
one in June (Dr was very conservative-limited improvements) 3rd just 10 days ago great results so far.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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