FDA Issues Warning on Controversial MS Treatment

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i was diagnosed with RRMS about a year ago but have suffered symptoms for years. Last year i started taking Gilenya and have been fine so far with only a couple of relapses. A few days ago i saw a doctor who recommended i should stop taking any medications and treat my MS with diet and maybe do the CCSVI procedure if needed. Now i am completely confussed as to what i should do, also i think diet makes sense but im afraid of stopping medication.

sara 9:05PM May 12, 2012

Just wondering if Dr. Lubin (a neurologist) or the Corrine Dickinson MS center is in any way compensated by any of the MS drug companies. Why not ask Interventional Radiologists who have performed this procedure what their thoughts are.It seems that there are many deaths and side effects from MS meds. Why aren't these meds considered controversial? My husband has had CCSVI by an extremely knowledgable Intervential Radiologist and had greatly benefited from it.My question is,why are most neurologists so against this? It is really very sad.

Diane B of NJ 10:19PM May 10, 2012

FDA in reality makes a joke out of them selves, as an organisation, by advising against the only promising treatment for MS, in 100 yrs.
Also, it should be obvious, that advising patients to consult a neurologist before decision about CCSVI, would be hazardous, because actually, neurologists do not learn about veins, and this is not a part of their education.
To consult a neurologist regarding angioplasty, would only result in a politically opinion, like the one FDA now are announcing by this very subjective proclamation: FDA Issues Warning on Controversial MS Treatment
Controversial? To whom? Wake up, grow up and take the real responsibility that FDA was supposed to take, protecting ordinary citizens against exploitation from commercial interests.

Per West 7:45PM May 10, 2012

The FDA needs to get real. People with MS are leaving the country to seek relief from MS symptoms. No one thinks this is a cure but I speak with first hand knowledge that this can help those with MS.
Dr. Lubin does not mention he is a Neurologist; his response is straight from the corporate playbook for neurology (not all Neuros are bad).
Dont ask the neurologists for facts related to vascular issues. They have no idea. Ask the people who already know as they have performed many procedures already.. Interventional Radiologists.
The last two MS drugs (both FDA approved) have combined KILLED DEAD more people(by a wide margin) than has CCSVI. So again I say, GET REAL.

Phil Ballai of NJ 6:41PM May 10, 2012

You can not say "MS is a progressive autoimmune disease that affects the nervous system." and then say "Its underlying cause is unknown." The underlying cause is unknown - yet we have suffered for years at the hands of doctors who BELIEVE it is an autoimmune disease and have treated us accordingly and erroneously.
Why would the FDA take a stand against an unproven theory like CCSVI yet support a theory just as nebulous - all at the same time admitting that the cause of MS is unknown!
I no longer have any faith in the FDA, the neurologists or medical researchers - most of whom are not trained as researchers. Who is trying to find out what the underlying cause is? Please stop telling what it isn't, please stop treating it as autoimmune when we know that is NOT the underlying cause, and help us find out what it is - PLEASE!

Mary Fields of NJ 5:25PM May 10, 2012

Since November of 2009 when CCSVI burst on the scene tens of thousands MS patients have flocked to clinics to have their neck veins opened, normal blood flow restored, and most of them have found relief from their MS symptoms. My wife was the one of the first to receive this treatment in December of 2009. Her life has improved considerably and she has come off Rebif, as a result. Unfortunately, she has had to have the treatment repeated three more times since then, since the neck veins refuse to stay open permanently. While the treatment is experimental, the empirical evidence from the thousands of successful proceedures proves anacdotaly that restoring normal blood drainage to the brain relieves MS symptoms. It is disappointing to read the negative tone of the release. All medical proceedures have risks, the negative outcomes mentioned in the FDA release need to be put into context of the tens of thousands of successful procedures. I produced a number of videos of patients who have been treated. These can be seen on www reformedms org

Steven Simonyi-Gindele of WA 4:30PM May 10, 2012

This article uses language such as controversial when describing this procedure. CCSVI is a separate condition from MS that may or may not be linked. The author of this article would have known this if they have done their research. Stop labeling procedures that are not supported by drug companies as controversial.

Vincent of NJ 3:09PM May 10, 2012

Its really ironic, some might say criminal, to find the FDA issueing warnings about a simple surgical treatment carried out in our hospitals on a daily basis, which when carried out in veins rather than arteries carries even less risk. The acceptable risk of death from this procedure in health services across the world is 1%. So one in a 100, the actual number of deaths that have occured in the treatment of CCSVI is 3 in 30,000, which is equal to 1 in 10,000, so this procedure is actually 100 times less risky in people diagnosed with MS, quite probably because they are younger and cardio fit. Apart from this, the FDA has no qualms about licensing Tysabri which has so far killed 49 people with MS in 94,000 and left 240 affected by the results of PML. The number of deaths from Tysabri actually equate to 1 in 1888.

Michele Findlay 2:54PM May 10, 2012