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

aliyalex · Post by **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?

aliyalex · Post by **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

Donnchadh · Post by **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

aliyalex · Post by **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.

Donnchadh · Post by **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