This Is MS Multiple Sclerosis Community: Knowledge & Support

Well, wondered what the hold up was on this one... I mean for him to get a question about it, and answer in his column. Found in my paper this a.m. but of course all over the place too.

This is good, it is nationwide exposure for a much read column, at least to raise awareness that something is out there. None of the answers are surprising, very safe and circumspect, wait for trials, don't fly overseas, the usual stuff. Whatever one agrees with or disagrees with in the article, it's still light years ahead of the US exposure we had on this last year....

Anyone want to take credit for sending this in? Glad you did!

Mark.

http://www2.timesdispatch.com/lifestyle ... ar-503324/

DEAR DR. DONOHUE: Do you have any information on a recent experimental treatment for multiple sclerosis? The treatment isn't available in Canada. Canadians and Americans are paying thousands of dollars to go overseas for their MS treatment. I am interested in your opinion. -- V.S.

DEAR V.S.: Multiple sclerosis is an attack by the immune system on the fatty insulation wrapped around nerves -- myelin. Myelin allows nerve signals to be transmitted to and from the brain at extraordinary speed, so muscles and bones react instantly. When myelin breaks apart, nerve signals are short-circuited. Weakness, pain, loss of balance and vision troubles result. There is no MS cure, but the number of medicines used for control is large, with new ones appearing almost yearly.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I also saw this in our local paper. This is a biggie as far as getting the word out - Donahue's column is in hundreds of papers. Interesting in that he is usually quite conservative in his answers. However in his response he didn't really 'put down' the liberation procedure, just expressed caution.

here's the whole article (note the last 3 paragraphs) -

DEAR DR. DONOHUE: Do you have any information on a recent experimental treatment for multiple sclerosis? The treatment isn't available in Canada. Canadians and Americans are paying thousands of dollars to go overseas for their MS treatment. I am interested in your opinion. -- V.S.

DEAR V.S.: Multiple sclerosis is an attack by the immune system on the fatty insulation wrapped around nerves -- myelin. Myelin allows nerve signals to be transmitted to and from the brain at extraordinary speed, so muscles and bones react instantly. When myelin breaks apart, nerve signals are short-circuited. Weakness, pain, loss of balance and vision troubles result. There is no MS cure, but the number of medicines used for control is large, with new ones appearing almost yearly.

When there is no cure for a chronic illness, people are willing to try anything that offers the chance of returning to a normal life. Experimental treatments, however, are experiments -- tests to determine the safety and effectiveness of a new therapy. Even when glowing reports come from a small number of trials, safety and effectiveness haven't been proven. The therapy could make a person's situation worse.

Stem cells obtained from the patient's own bone marrow are a new MS treatment. They're injected into the spinal canal. Trials are still in progress for this treatment.

I believe you refer to a treatment devised by the Italian doctor Paolo Zamboni. His idea is to open veins draining blood from the brain in a way similar to opening clogged heart arteries through angioplasty. The procedure is called liberation treatment.

Dr. Zamboni believes that the obstruction of blood flow in brain veins leads to an accumulation of iron in the brain. Re-establishing normal flow through those veins rids the brain of iron and rids the patient of MS symptoms. In many places across the world, clinics have opened to carry out this procedure. Some of these clinics have little supervision. In Canada, the province of Saskatchewan plans to sponsor and supervise trials in early 2011.

I would undergo this treatment only in places that have obtained official permission to perform it. The Multiple Sclerosis Association of America provides detailed information on MS and its treatment. You can reach it at www.msassociation.org or at (800) 532-7667.




Readers can send questions to Dr. Paul G. Donohue, P.O. Box 536475, Orlando, FL 32853-6475.

Thanks. I'm loathe to reprint entire articles for copyright reasons, but hey now that ya gone done it lol.

Yes, it is a biggie, for nothing more than exposure reasons. He could have been far worse on it than he was, but didn't vary a bit from what would be considered his normal way of looking at things, so I was pleased, he didn't zig, or zag either direction from his norm. I did note however after reading it again, he failed to mention the term CCSVI, even after showing that he had done a bit of homework, and at least had a working grasp of the concept, but, overall, I'm satisfied that he put it out there, he answers a wide range of questions and wasn't afraid to broach the subject.

You know, when most people, myself included, are suddenly faced with something new, the immediate human reaction is to try and reach out and find something you do have knowledge of to create a frame of reference.
CCSVI is no different, it so easily fits in with the bee stings and hanging upside down on full moons treatments of the past. While I don't fault him for reaching out for the "every new novel theory which has had glowing reports from people flocking overseas to get treated" creates that image that exactly that is happening. Well, it is, but I wonder what the good Dr. would have to say about people flocking to San Diego and having their insurance cover it, or Stanford, Georgetown, BNAC, obviously a host of others. Not studied thoroughly, yeah we all got that about 18 months ago, but definitely OUT of the bee stings while vacationing in Mexico from a few people here and there. Way out of that league. What league it's in, who knows, but on a different plane, that's for sure.

I note also how these types of thumbnail sketches seem to all paint the same portrait (and I'm not ascribing any motive on his part, just how it sounds when read), "Dr. Zamboni comes up with new theory, people flock overseas for the latest promise of miracle cure/treatment/therapy", end of story, more study needed, nothing to see here, don't pursue treatment or testing, yadda yadda.

I dunno, sometimes it all sounds like halfway good advice, not sure what to make of the whole thing...

Gonna go back to putting these taters n' beets in my veins. So far a little clogged up but will make it work somehow...

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I think saying "I would undergo this treatment only in places that have obtained official permission to perform it", is a tentative endorsement.

It beats, "Don't have this procedure done to you, risky dangerous, don't you know x number of people have died!"

Thanks Gici! Taking the time to do this is important. I can't wait to see it.

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.