hI My name is Agnes I have MS since 2011 Im from Poland and living in England (Rugby) 8 years . Had few symptoms like numbness, electrick shock in my back bone, optic neuritis twice, tingling in my legs. I hear about CCSVI this realy work ? Did we have any chance to have operation in England ? I think I will speak with my neuro soon and I will ask them about CCSVI I would like to know more about and if any one can share with me the positive side and negative side of that will be great 
Im new on this forum Thank you Agnes
Hi To everyone that reads this post,
I checked out this forum the other day and then I went on to do, 5 hours online research, met a Mad Genius Doctor online who genuinely believes heās found a cure. I had a 2 hour Skype meeting with this guy, very interesting, I have no doubts that he genuinely believes in the research heās doing. This is what he told me;
The Zamboni theory (ccsvi) does work but to be completely effective it needs to be in conjunction with a stem cells treatment. What happens is the artery when inflated with the balloon works for a while but then can close causing it not to work possibly even being worse than in the first instance. This doctor believes the stem cell treatment heās carrying out, although in the very early stages can fix the artery once the Zamboni treatment has been carried out. This doctor believes he and other doctors around the world have found a cure for MS but only in the early stages of the decease. Whether they could go on to help reverse gene damage is not yet possible but again more research needs to happen now.
The stem cell treatment heās carrying out seems to be quite controversial and this doctor is not only struggling to get funding but also permission in certain countries to do research. Heās also like some fugitive that is scared he may get killed by a drugs company.
Mind blowing stuff! The doctors/scientists are on the brink of finding a cure, Stem cells is the answer but the information and the research seems as itās being suppressed. Itās not in the interest of drug companies to find a cure or the government. Its up to us the MS sufferers to lobby the MPs! Ask your consultant about these discoveries, demand answers, the neurologists know thereās an answer but itās not in their interest to find it, they get paid a 6 figure salary to keep the wheels turning and not to upset the apple cart.
No abuse please, donāt shoot the messenger, this is just a report of my personal investigation to find a cure for myself, which I just wanted to share, hopefully itās helpful. Take care x
No, lets not shoot the messenger!
However let us also remember that ideas that are - shall I say - off the wall, come up about every two or three months.
Some show up here, some show up on other forums, but they all tend to have one thing in common - they cannot distinguish between treating the symptoms and curing the disease.
So:
1 - No-one yet knows what the cause of MS is. The first person to find out is in the running for a Nobel prize, so please do not suggest that our Neuros are actively not looking for a solution to our problem.
2 - A few years back, CCSVI was the hot item for discussion. Before there was any real evidence either way, āclinicsā all over the world were offering the treatment at prices as high as they thought they could get away with. Most have now closed.
3 - More recently stem cells have become the hot item for discussion. Before there was any real evidence either way, āclinicsā all over the world were offering the treatment at prices as high as they thought they could get away with. Most have now closed.
Serious researchers continue to work on CCSVI (is it a cause or a treatment?) and on stem cells (is it a successful treatment?).
To suggest that information on research is deliberately being suppressed is at best naive, and at worst libellous. Had you named anyone in this regard in your post, I would expect the lawyers to be knocking on your door already.
4 - Those of us who have been on this forum for more than a few hours can cite a few more examples of wonder treatments that have come and gone.
Geoff
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Hi makeadifference
Combining CCSVI and stem cell therapy sounds to me to be a good way to make a lot of money.
Be careful there are a lot of people out there willing to make a very good living out of othersā misery.
Anne
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Well said Geoff.
Whenever I read these old threads, it makes me miss rizzo so much. You couldnāt persuade her to start posting again, could you Geoff? Donāt mention this thread though, she was blowing her rivets on this one.
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Rizzoās escaped! Last time I saw her, she was lounging in her new bath. Sheās sensible.
I just want it all to go away. This thread has been awful to re read.
I occasionally venture into loony land aka thisisms. Their huge ccsvi thread has very little traffic now.
Thereās a crooked vulture in India offering stem cell treatments. Heās not a real doctor and he should be in jail. He advertised (by pretending to be a patient) on thisisms.
Thereās a certain other magic cure vulture on there too. One of his friends posts about his wifeās treatment. Thereās a short discussion and then a ranty post by a woman telling people that the magic cure vulture is a saint in human form. Sheās the āwifeā. It is all complicated and confusing and stressful and best ignored.
I Read the Barts blog. They do care about MS and donāt charge. Or Science Based Medicine.
Yup, rizzo is dead. It was announced by brog64 after rizzo visited with her in Australia.
Karen, on the other hand was alive and well last time we corresponded, and she did say that she was not planning to return.
@ Sewingchick
It always makes me curious why someone signs up for this forum, and a few hours later is:
a - telling us about a new wonder cure (without any detail, of course, so it looks like a teaser advert)
b - then goes into the same old rant about the evil drug companies buying the opinions of the medical profession - and slagging off both.
I found rereading the old thread most entertaining (almost compulsive reading) and I do wonder if some of the opinions of makeadifference are really those of the anonymous āDoctorā he/she seems to be shilling for. I may have to retract that last remark (given adequate evidence, of course) so we shall see.
@ COSGalto
I do love your term āMagic Cure Vultureā. The people I feel sorry for are the folk who believe them - they would reject an internet scammer in a flash, but seem to want to fall for the same thing if it is a wonder cure for MS.
Geoff
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"Hi Guys,
Yes I am real! Iāve given myself a pseudonym because Iām worried about posting online about having MS and how it will effect my career, I have to work and earn money!
Iām just going off the research Iāve been doing online! I also watched the Panorama TV show 2 weeks ago, about the MS stem cell trial in Sheffield and how 20 patients all had great results.
From there Iāve spent hours and hours online, just like when I was studying for my thesis at uni to get my degree (in a completely different subject, but reading is education, whatever and this is more important, I donāt want to end up in a wheelchair).
I found 1 review of a trial of over 2,500 people with MS which was featured in the New York Times, link below:
The full link for this article is: http://www.nytimes.com/2012/09/20/health/research/bg-12-pill-shows-promise-in-suppressing-multiple-sclerosis-relapses.html?_r=0
Quote from the results below:
āInterferons, the drugs most commonly used in relapsing M.S., reduce relapses by about 30 percent, and have not been shown to slow the progression of the disease and disability.ā
An I also read about a trial in China in 2010, the results I read directly from the clinical trial papers. The trial was tested on 8 patients with MS, umbilical stem cells were used. 7 patients got much better only one patient got worse. Read for yourself link below:
Iām thinking about giving it a go, yes it is very expensive and Iām pretty angry, Iām tying to figure out why itās not available on the NHS, I have paid my taxes etc. And why does my GP want me on interferon when its been proven it doesnāt slow the progression of the disease and disability?
Stay positive! If they can send a little machine to Mars I think they can cure MS, especially when you consider its not a new decease! And seriously you donāt have to be a genius to work out that the drugs are mega expensive and a total rip-off! Some of the MS drugs are $50.000 per year per person???
Please stay positive good things happen when your positive!!! Take care x
Honestly makeadifference,
You claim to ādo researchā then give us a thread to the NY Times from 2012 about a drug that was originally called BG12 but which is now called Tecfidera and is a first line treatment available on the NHS. I think if you do your research, then youāll find that most neurologists today would prefer to start a person with RRMS on Tecfidera rather than an interferon. Because it is more effective.
Sue
Further to the post from Ssssue ā¦
Please, , do go back to my post of Jan 27th and re-read the line:
ā, distinguish between treating the symptoms and curing the disease. ā¦ā
and try to comprehend the difference.
AFAIK, all the DMDs currently available claim to reduce the incidence of relapses by between 30% and 60%. This suggests that they are for use by people with RRMS. You quoted a Chinese study involving just 8 people with SPMS.
There was a discussion in the āoldā forum (say 5-6 years ago) as to whether a reduction in relapse rate could be counted as modifying the course of the disease. To really reach a decision on this, you do need to have some study of the Philosophy of Science. Such study will also help when you read the discussion in the paper you linked to and find a line that starts āThis proves ā¦ā when it does no such thing.
No scientific study ever proved anything.They all āsuggestā, or āindicateā, or ādemonstrateā how the results can be understood.
There are other flaws in that Chinese paper, but if you cannot grasp the first difference above you might have trouble understanding them.
Now tell me ā¦ why do you quote a figure of $50,000 āfor MS drugsā when:
A - this forum is provided by a British MS Society.
B - some of the DMDs currently available in England cost the NHS less than Ā£10,000 per annum.
Methinks you need to widen the scope of your āresearchā just a bit, and stop believing everything that you read on a US website.
Geoff
- Diagnosed as clinical SPMS according to McDonald criteria by experienced neurologists [10,11];
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For makeadifference: HSCT (that is hematopoietic stem cell treatment) is available on the NHS, if you meet the criteria. And you seem to be talking about stem cell treatment, not about CCSVI which is what this thread is meant to be about.
If you want to find out the criteria for HSCT, you could read this thread
āYou could also find out lots about it by putting HSCT in the search box on this forum.