Has anyone had CCSVI treatment?

Everyday living
41

Geof

You seem top confuse licensing with proven disease modification. There is little or no evidence that what one might call the traditional licensed drugs BI/Copaxone actually do modify the course of the disease

Here is the MS Society summary

http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-drugs

So in effect the traditional licensed drugs are proven to have a minor effect on relapses not disease progress.

We then need to consider if other less effective trail data has been with held. Can’t help with that question.

You are quite right the Health Committee report is now quite old, but so far as I know little if any changes have occurred for the good since it was written. Indeed many things seem to be worse safety wise concerning the newer MS drugs

42

Hi All.

Must be stupid not listening to my self.[told myself to leave it alone]

Did anybody see Anonymous post,being scared of trying to get it back to its original post.[that has to be wrong]

Annie,what makes you think i bury my head in the sand.[nothing wrong with rugby]

Belinda,totaly agree with your last sentance.

Agree it is right and proper to put people straight,but does it have to take so long

What people need to understand is i anyway found it hard to take in and understand it,so sorry for wasting your time,it has taken me 45 mins to post this,and as i dont have many spoons left.

Anybody upset with my remarks, sorry that was not what i intended.

Take Care.

Chris.

43

There have been umpteen studies of this. CCSVI has not been found in people with CIS or in children with MS. CCSVI does not cause MS.

44

LMAO Chris… I couldn’t agree more. I wish to goodness it didn’t take so long but some people just keep spouting the same old nonsense over and over. Some of them for years now… And so I feel obliged to keep responding.

Go conserve your last spoons and I don’t think you wasted anybodies time nor did you upset people.

Cheers,

Belinda

45

The people who argue against certain statements made on here (me included) are not against the original question or against people posting their experiences or opinions. We are against people stating wildly inaccurate information that might mislead.

If the statement that “MS drugs” don’t work had not been made, I would simply have ignored this thread. (As demonstrated by the fact that my initial response is the 17th reply.)

Anyway, please don’t be scared of me! Well, unless you’re going to start quoting crazy statistics and making false claims and accusations?!

For what it’s worth, I’m thoroughly confused why people can’t see that CCSVI and MS might be two different things. CCSVI has been identified in lots of different patient groups as well as in healthy people. Logically, that means that some symptoms that have been attributed to MS may actually be due to CCSVI. In which case, having “liberation” might improve those symptoms, but the underlying MS will be unaffected. Interpreting improved symptoms as improved MS is understandable, but unhelpful.

Karen x

46

You flatterer you, lol! “Young”? I wish!!!

The original Zamboni paper showed that 65 MS patients all had CCSVI, but that 235 healthy people did not. 100% vs 0% never happens. And it hasn’t since, despite many attempts.

Like you, I follow Prof G’s team’s blog. Good science by knowedgeable clinicians and expert researchers who actually care. If any lay people out there want to know who to believe, well you could do far worse than follow the multiple sclerosis research blogspot.

Karen x

47

[quote=“Cyndi T”] Oh well, at my age 56 and having tried all those drugs after 35 years living with MS, getting to the point of seriously Considering Suicide two years ago, I am now just happy to wake up having slept well each morning since December 2010 knowing I will not have to spend most of my day exhausted on the sofa, to be able to eat and drink and breath without choking and coughing. Or worry about my bladder letting me downEtc. :)) Placebo effect 16 mths, not bad for the money, good value even just my opinion, for what it is worth. [/quote] Cyndi -There is nothing more scary then uncontrollable coughing and choking.lts something that l suffer from and l had a friend, with ms , who actually died from choking whilst out with his family for a celebration meal.So l do know exactly how relieved you must be if this problem has now ceased. l wish we could have a seperate forum for people interested in dmd’s where people who take them can tell of their experiences - whether good or bad. And pwms who do not take dmd’s - which is probably the majority of us are not allowed to turn it into a overheated debate.

The same would apply for people interested in CCSVI - and would like to hear from first hand experiences of those who have had the treatment - whether good or bad. And pwms who are not in the least interested should not be able to hi-jack the post.

As someone with SPMS - 30yrs - l am interested in posts like Cyndi’s - And l do not want people put off posting on here because of the same old crowd of ‘experts’.Which is what is happening - l get pm/emailed by people about it - and its not fair that they should feel intimidated - we are all in the same boat - so stop ‘rocking it’.

l am surprised the mods have not interfered more - they have tried. But when people are ‘scared off’ -shouted down- and feel they can’t write about their personal experiences then its time things changed.

Chris - Please don’t be put down by any of the comments - Your posts are always good to read - and yes l like Rugby too.

lts time to ‘chill out’-[ have a spray of Sativex]

F.

48

Who is rocking that boat? The people who post wild accusations or the people who challenge them?

Incidentally, I too get frequent pm/emails. Half the time I don’t have a clue who they are from, but I always reply. Sometimes they ask for advice. Sometimes they ask for information. Sometimes they ask for something technical to be translated. Lots of people just say hi. Others ask me to intervene somewhere or reply to something that they think I can help with. The ones I get more of than any other type simply say thank you.

49

Hi Chris

I really didn’t want to upset you.

However when people post nonsense or deliberately write half truths on the site then I am grateful to the people that take the time and trouble to challenge this and give another point of view. I would be really worried if somebody newly diagnosed were to take some of the posts at face value and make disasterous decisions based on them.

I don’t know if you bury your head in the sand or not but I do find posts where people don’t like the debate on here annoying. When I first came to this site I was really grateful for the information it contained and appreciated the time and effort that people made in posting information.

There is nowt wrong with rugby but I wouldn’t be interested in discussing it

Take care, hope you’re feeling better tomorrow.

50

Up to your old tricks of trying to move the goalposts again, David?

Your exact words above were:

“We do need to remember that most treatment routinely offered for MS are not licenced for MS …”

And now you have changed this to:

"There is little or no evidence that what one might call the traditional licensed drugs BI/Copaxone actually do modify the course of the disease "

Which looks to me like an admission that the Interferons and Copaxone are licenced.

And, when you quote:

http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-drugs

And follow this up with a statement like:

So in effect the traditional licensed drugs are proven to have a minor effect on relapses not disease progress.

You are actually arguing against what the MS Society is saying.

Now, I can understand that someone who does not suffer from MS may have some difficulty in comprehending this, but the words used by the society:

Interferons are proteins produced naturally in the human body, and help fight viral infections in the immune system. It’s thought that beta interferon can reduce (and might prevent) inflammation which can damage nerve fibres in MS.

Glatiramer acetate (Copaxone) is thought to work by connecting to cells to stop them attacking the myelin and causing MS symptoms.

are a pretty clear indication that the DMDs referred to are actually working to affect the course of the disease. Their effect of reducing relapses is the overt sign that they are working. Since they have an average effect of reducing relapses by 30% and of reducing the severity of relapses I find it hard to understand how you can justify the use of the expression “minor effect” . Certainly, my own experience of Copaxone has been that the reduction in relapse rate has been better than 30%.

Teva Pharmaceutical Industries’ own study (reported as the PreCISe Study) show values for statistical significance that are the highest that I have ever seen (that is between p=0.0005 and p<0.0001). If you do not know enough about Inferential Statistics, i will be quite happy to recommend a good basic text.

Geoff

51

Sorry that you did not understand the point I was making.

I would call something a disease modifying drug if it stopped or slowed disease progress.

If it just reduced relapses by 30% then I would not call that modifying the course of the disease.

However I would suggest you follow your own advice and leave this discussion to those who wish to discuss seemingly more effective treatments like CCSVI. Some of them do seem to be getting really significant results.

52

I wonder if you do it deliberately David?

Notwithstanding the fact that it was actually you who took this thread away from CCSVI and that you have not replied to the posts on the “Disease Machine” thread that you started ostensibly to stop this kind of diversion from happening once before, I will reply to this latest outrageous statement (as I’m sure you expected). However, I will do it on a new thread. If you are too scared to engage in a scientific debate (again), then we’ll soon find out.

53

Personally I think the CCSVI/Liberation treatment is yet another spurious treatment taking lots of money from vulnerable people.

Does anyone know how Mrs Zamboni is? Although anecdotal her improvement started this all off; it would be nice to know if she kept her improvements.

Why plonkers like David have to make wrong statements is strange when he is not the PWMS. In fact his wife as I understand; the PWMS; does not want the liberation treatment.

George

54

If you google CCSVI you will find hundreds if not thousands of testimonies. There are even forums especially for it. A word of warning though: people who have bad or negligible results from it don’t tend to post.

The main reason that not many people are giving their stories on here is that there are not that many regular users of this website who have had it done.

Karen x

55

Didn’t Tavish have it done and if i remember it wasn’t very succesfull.

Also Montyclift but we never heard how his ‘so called liberation’ went

56

Tavish had it done and we were all so hopeful for him. And devastated when it didn’t work. Such a lovely bloke who really deserved a break. Tavish - if you’re lurking, I hope you are doing OK and I’d still love to do that murder mystery game!

Montyclift posted a while back and said that he hadn’t had it done. No more info though.

Karen x

57

Yes pretty devastated for Tavish he really deserved some good luck. I was sure Montyclift was having it done as he was going to Glasgow to have it done.

I think i will stick to what the Neuros believe at the moment and the QE in Birmingham have been on to me this week about being involved in the trial for Tysabri in SPMS so who knows there may be something to help the people with SPMS

John x

58

Yes pretty devastated for Tavish he really deserved some good luck. I was sure Montyclift was having it done as he was going to Glasgow to have it done.

I think i will stick to what the Neuros believe at the moment and the QE in Birmingham have been on to me this week about being involved in the trial for Tysabri in SPMS so who knows there may be something to help the people with SPMS

John x

59

[quote=“goodvibe”]

Many people who have had the procedure done don’t post on its outcomes because the results have been less than favourable. I know a couple of people who wish they had never done it as they have had no improvement and it cost them a fortune into the bargain.

But when they have posted about their negative results many advocates of CCSVI have told them that it is often necessary to repeat the procedure. More money after bad…

Also as a general rule, people tend to talk up and indeed become evangelical about a positive experience in their lives but it is human nature to not trumpet about failures in ones life. (And I am not referring to CCSVI in particular here, I mean in general).

So seeking anecdotal evidence about a treatment can lead to very skewed and unreliable results. Which, I presume, is why so many posters try and redress this by posting objectively about it and giving a non-biased, scientific, evidence based view in an attempt to balance up the opinions.

Hopefully in this way posters such as who wrote the original post can make an informed decision about her options. Which surely is in everyone’s best interests?

Belinda

60

Actually, goodvibe, I think Belinda’s was a good point, politely made. But I think we’re all old enough to know you can’t please everyone.

Alison