What a Doctor recommended to me today..

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

What a Doctor recommended to me today..

Postby L » Wed Nov 10, 2010 2:38 pm

A Doctor who works in the A+E department of a major London hospital today said, making it clear that he was giving a personal and not a clinical recommendation, that I should get tested and treated for CCSVI. A friend of his was treated earlier this year and he considered the results impressive. I hadn't mentioned the subject until he brought it up by the way.

So that was nice to hear. An authoritative stamp of approval is always reassuring, however convinced you are to begin with.
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Postby Perky » Wed Nov 10, 2010 3:50 pm

That is nice to hear, and very encouraging! I have been feeling a bit disappointed/negative about the liberation procedure lately, after hearing about mostly non-positive experiences, so this has made me feel a bit more hopeful. Thanks for sharing this with us! (and it's always nice to hear some UK-related news here! :) )
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ccsvi update on treatment- 14 days later

Postby tiredloulou » Wed Nov 10, 2010 4:31 pm

I am feeling much stronger, very noticeable
using a walker in house 100 feet x 3 rounds a day
free-standing
comfortable on balance issues, no holding hands out
no holding on to something

the triple swallow, which happens occasionally in past
gone
fatique.......gone
good sleep
people are amazed when they see the difference
1 stent
1 ballooned
good luck to all who are doing this, it is the team effort here that puts us all on the map of ccsvi for m.s.

I continue to see small results , that are large to me
lifting of leg without holding or helping it.( just happened last night and again today.... after 2 wks of procedure.......
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Re: ccsvi update on treatment- 14 days later

Postby L » Thu Nov 11, 2010 1:43 am

tiredloulou wrote:I am feeling much stronger, very noticeable
using a walker in house 100 feet x 3 rounds a day
free-standing
comfortable on balance issues, no holding hands out
no holding on to something

the triple swallow, which happens occasionally in past
gone
fatique.......gone
good sleep
people are amazed when they see the difference
1 stent
1 ballooned
good luck to all who are doing this, it is the team effort here that puts us all on the map of ccsvi for m.s.

I continue to see small results , that are large to me
lifting of leg without holding or helping it.( just happened last night and again today.... after 2 wks of procedure.......


Glad to hear it! Any small improvement for me will seem very big. Only three weeks to go..

And Perky - it's true, ther negativity hasn't swayed my conviction but the drip, drip, drip is very tiring. Especially here on this forum where I seek encouragement and not scepticism. (If I wanted that I'll give my MS nurse a ring.)
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Postby Coolcatcarrie » Thu Nov 11, 2010 3:58 am

Its very lovely to hear some UK news. Fab news tiredloulou about the results your having! And keep the positive stuff coming! Just cant wait until its my turn! :D :D :D
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Postby ConstableComfortable » Thu Nov 11, 2010 2:56 pm

Nice one L. Good to hear honest opinions of medical professionals, rather than just official lines.

I went to my GP (she had never heard of ccsvi), and she contacted the interventional radiologists at a local hospital on my behalf. A message came back not to get treated abroad but to wait for trials here in the UK.. yadda yadda.

I've also been in contact with the NIHR who organise trials for the NHS and they sent me this response

http://constablecomfortable.blogspot.co ... ccsvi.html

So there could be something happening after January if it gets approved.
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