HAVE ANY TREATMENTS WORKED FOR YOUR MS??

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

HAVE ANY TREATMENTS WORKED FOR YOUR MS??

Postby thornyrose76 » Wed Dec 09, 2009 7:30 pm

Okay, have any of the traditional and approved treatments worked for whatever type of MS you have? I was on BETASERON for about four years but then stopped after the MS Neuro said there was no point in taking it as it was not working...A nurse stated to me last year that the injection drugs weren't as effective as they had originally first believed. What has been your experience? Anyone?
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Postby ozarkcanoer » Wed Dec 09, 2009 7:40 pm

thornyrose, I have been on Copaxone for 2 years. I have never missed a day. My fatigue and headaches just get worse and worse as time passes. :( :(
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Postby thornyrose76 » Wed Dec 09, 2009 7:54 pm

I always felt worse the morning after I took the BETASERON ... i continued to progress and quickly , too I went from heaviness in my thighs from age 22 in 98 to being in a wheelchair by the age of 26. Now at 33 my hands are going,,, it's been a total nightmare. I want this procedure done so badly what ZAMBONI AND DAKE are doing that I'd cut s limb!! Why on earth has DAKE stopped doing the procedure? This seems to be the only plausible theory and effective treatment...when are people going to wake up...people have been in improving and over years, so what gives?? People are improving right? :(
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Postby ozarkcanoer » Wed Dec 09, 2009 8:00 pm

thorneyrose, cheer up... Dr Dake is going to start formal clinical trials soon !! That is why he stopped the informal testing. With the formal clinical trials we will see papers and more evidence for the scientific community. Plus Dr Dake's trial will set standards for the procedure.

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Postby selkie » Wed Dec 09, 2009 8:00 pm

Thornyrose, there's been little media coverage in the U.S. - try getting local media involved. I sent the CTV-W5 link to all local media - none have responded yet, but the more people who demand coverage and attention to Zamboni's work, the better.

Also, I'd write Montel, Oprah, and the nat'l networks - anyone you can think of.
Michael Moore, Bill Moyers, - someone has to help people with MS get the word out.

As for the surgery itself, yes, there are a lot of stories of improvement, but there's also risk involved.

I quit Copaxone over a year ago and when I told my neuro, he didn't bat an eye. He just asked me if I wanted an Interferon instead. I told him, no, I want to be tested for CCSVI - he's not against the idea - but he's not helping me get the testing either.

I think we just have to be very vocal - all PwMS.
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Postby thornyrose76 » Wed Dec 09, 2009 8:35 pm

ozarkcanoer wrote:thorneyrose, cheer up... Dr Dake is going to start formal clinical trials soon !! That is why he stopped the informal testing. With the formal clinical trials we will see papers and more evidence for the scientific community. Plus Dr Dake's trial will set standards for the procedure.

ozarkcanoer


I'd love to participate in that trial, this may sound really stupid but I don't imagine it's all expense paid trip is it? Because I simply CANNOT afford.
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Postby thornyrose76 » Wed Dec 09, 2009 8:39 pm

selkie wrote:Thornyrose, there's been little media coverage in the U.S. - try getting local media involved. I sent the CTV-W5 link to all local media - none have responded yet, but the more people who demand coverage and attention to Zamboni's work, the better.

Also, I'd write Montel, Oprah, and the nat'l networks - anyone you can think of.
Michael Moore, Bill Moyers, - someone has to help people with MS get the word out.

As for the surgery itself, yes, there are a lot of stories of improvement, but there's also risk involved.

I quit Copaxone over a year ago and when I told my neuro, he didn't bat an eye. He just asked me if I wanted an Interferon instead. I told him, no, I want to be tested for CCSVI - he's not against the idea - but he's not helping me get the testing either.

I think we just have to be very vocal - all PwMS.



The local CTV affiliate did do a piece on it, and there was a small blurpin the localyocal paper but someone like MONTEL who has this disease should do a show on t his, also the AMERICAN MEDIA HAS BEEN SUPER SLOW TO GET ON BOARD, WHERE IS LARRY KING WHEN YOU NEDD HIM? Montel should be on Larry king and they should talk about this bc lk live has a big audienceI ANYONE WHO READS THIS CONTACT LARRY KING AND DEMAND THAT THEY DO A SHOW on this!!!!!!!!!
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Postby SarahLonglands » Mon Dec 14, 2009 9:31 am

Thorneyrose, it might not be an approved MS treatment, but I took antibiotics a la Vanderbilt for one year full time then three intermittent, then two nothing at all and from having rapidly advancing SPMS I have improved so much that I have not had an MS episode these last six years. I should take a look at the antibiotics forum or this site, written by my husband, a medical microbiologist and Fellow of the Royal College of Pathology:

http://www.davidwheldon.co.uk/ms-treatment.html

Even if you travel to Vanderbilt University to see Professor Ram Sriram, it will cost you nothing like a trip to Stanford to have stents put in your neck.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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