Forum

At last......after the controversy around CCSVI

Hello Mrs H.

Although I now know I do not have MS, I was interested in reading about ccsvi and the people who had tried it.

Some folk are of the very strong opinion that the procedure has definitely helped their MS symptoms, or even cured them.

Then there were posts from members here, who said, after forking out thousands of pounds, the procedure was a let down, or it caused more problems for them!

Sadly some folk are prepared to try anything, in order to rid themselves of this terrible illness.

That`s the way of the world.

luv Pollx

Hi Poll Happy Sunday !! Xx

Thanks for the link MrsH.Despite the results,if I had the money I’d try it.The NHS aren’t breaking any records to help me,and a reduction in pain of any length would be money well spent in my view…Must get a scratchcard

Be lucky,

Wb x

From this very website…

http://www.mssociety.org.uk/ms-news/2013/03/first-results-key-nmss-funded-ccsvi-studies

Not quite the same subject, but interesting!

So far as I can see the results from clinical trials on CCSVI give such differing results that they do not really give any useful guide to those considering if they should pay for the treatment. When you look at patent reports some people do seem to benefit greatly some people a little and some no at all. It is also clear that even those who benefit greatly long or maybe short term will need the procedure repeating.

Difficult decisions made worse by the lack of a really good approved treatment option.

Hi Everyone, whether or not it works I was wondering have they figured out why a higher % of pwms have these blocked veins compared with people who do not have ms.

Moyna x

Hello,

Is that a fact? I was hoping something would come from ccsvi that may help us. But you never know.

it makes me sad that it seems like another interesting theory is being de-bunked but it looks like its over for CCSVI.

I never really held out much hope for it myself, didnt really understand how it worked, but when you look at this disease it seems unlikely to me that its just one thing thats causing it. Maybe CCSVI is not one size fits all cure for MS. Maybe it does work for some people though, i cant say ive never met anyone whos had it, or even anyone who has MS for that matter.

My anger lies with the “MS experts” or the “MS Specialist”, the consultants. they honestly dont have a clue whats goin on, and neither do i.

If my boiler breaks down and i phone a heating engineer, he turns up and says " well… ehh… i dont really know whats the problem…" do you think i call him an expert?

Lets not forget that its these said individuals jobs to know more than the people that are referred to them,

I wish i was wrong, but i dont see enough evidence of that. All we seem to be doin on the MS front is fumbling about in the dark trying to get lucky. Its a joke, a really bad joke

Hi Raymond,whether you like it or not you are the world’s leading expert on your version of MS.The consultants are there to give info on the General Model of MS.Just made that up,but sort of sounds alright,oh yeah,so then you can take the bits which might mean something to you.The GP is the drug dealer and the Pharmacists are the pushers.

The neurologists have been mucking about with MS for 80 odd years and still can’t explain a great deal about it.There is that much money involved now that we tend to be forgotten as individuals and are herded together into groups that fit the criteria for certain types of drug.

Wb

I know this to be true, i just wish it was a paying job like some people have :stuck_out_tongue:

I also wish moaning about it made you better.

Raymond if moaning made it better I’d be pole vaulting in Rio.

Wb

Wobly - ls that the olympics or paralympics. At 6.45am this morning - whilst trying to reach the dogfood bin - l vaulted over and landed between my ‘exercise’ machines’ it took me ages to get up. Two hungry rottweilers all excited thinking it was a game - and every part of my eliptical trainer and healthrider of course are moving parts - did after a lot of effort get up - fed the dogs and went back to bed - with a good book. [ Short of bad men]

F.x

Oh and on the CCSVI matter - l am with Steve - after having a vascular ultra-sound - l have restricited flow in my right jugular- so l would like to be ‘treated’. And l do no of someone whose ms has improved greatly after having the liberation treatment. This was about 3yrs ago. She has been back once to be checked - Poland.

F.

ps. Friend of ours - a very fit - we thought - 46yr old - was feeling very ill - went to his GP- receptionist said they could not see him - turned him away - then luckilly - a nurse spotted him leaving - could see he was not well and took one look and called the paramedics.Heart Attack.He ended up having angio-plasty and a stent.Now liberated he is feeling much better. This chap swims everyday - does martial arts - does not smoke. What a frightening experience.

Think we should all be tested regardless of ms or no ms. lt only takes a few minutes - and is not expensive to do. [Unless you go to Essential Health]

I’m sorry…I soooo know I shouldn’t…but another coffee spitting incident…you’ve cheered my morning right up as I sit here stressing about hospital appointment this afternoon. It sounds like a “you’ve been framed” moment !! Xx

Hi Frances, so sorry ot hear of your accident this morning…always thought keep fit was bad for us! I`m referring to the machines you landed on! Hope your feeling better.

luv Pollx

Yes Poll - another youtube moment missed. This time not-in my leopard print pyjamas - l was in my red with white polka dots and bare feet. l have the best of times in my pyjamas.

l have been ‘miles’ on my tramper with the three dogs - this morning. lts a lovely sunny but cold day - birds singing - lots of lambs out in the fields. All my washing dried on the line - doesn’t get much better - easily pleased. Met some nice chatty folk on my dog walk - not everyone avoids rottweilers!!! l am more the ‘mad woman with the rotties’ - not the woman with the mad rotties.

Fx