This Is MS Multiple Sclerosis Community: Knowledge & Support

By February of my senior year in high school I was totally exhausted. The Doctor diagnosed Anemia. (How would this correspond to Dr. Zamboni's opinion that the brain damage in MS is caused by the iron in refluxed venous blood?) Nearly 30 years later a French Neurologist determined that the MS began when I was 18. I was surprised because there were no neurological symptoms at the time, they would come 14 years later. There was only the fatigue. This implies that blood flow through the brain is insufficient to nourish it, in particular with OXYGEN, and that this is a major cause of the fatigue in MS. Maybe my entire circulatory system is deficient, not just the veins which drain the central nervous system. (I have always assumed that nervous system damage meant that ordinary activities were more difficult to perform. That must be true as well, but lack of oxygen can certainly exacerbate the fatigue.)

The only time when I have the impression that my brain has been "oxygenated" is after a good swim when the blood circulation must be at full force. My right side is handicapped, but I can do the crawl by using my good left arm to stretch out the right arm after which I use my back to advance the right arm and then turn to extend the left arm in good form The water holds up my body. During the summer I can swim every day and that is the only time I can really exercise my entire body, as well as feel clear headed and alert. An added plus is that the body doesn't overheat. See MS Cure Enigmas.net

Nice to hear your story.

Also, spamtastic!

tilt

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

she might benefit from putting the 'MS cure enigmas.net' into the signature line

Have you been treated for CCSVI, vesta? I used to feel awful after exercise, it was clearly bad for me, and would worse my MS symptoms that day and the next day. Now after CCSVI treatment, exercise is clearly good for me and I feel better when I exercise and afterwards. It's like being normal. Surreal.
But I think we should always do what works, and if swimming works, then lots of swimming.

I don't know what the signature line means but I'll look into it. No, I haven't been treated and don't plan on it since I appear to be able to control the disease through enhancing blood circulation.See the entry MS: Cure or Control? (Also Angioplasty Decision) MS Cure Enigmas.net
Apparently one third of MS cases experience a spectacular recovery after the blocked veins leading from the CNS are opened with angioplasty.This means a Cure.

Maybe two thirds of MS patients obtain little or no relief from angioplasty. The jugular vein "restenoses" after being opened 50% of the time. If the vein collapses so easily, it may open easily as well. I have found a neck massage pushing the blood down towards the heart is enough to stop an “attack”. I believe the various vein abnormalities (wall membrane too thin?) can be more subtle than a mechanically treatable stenosis. Blood circulation can be restricted by a weakened vein which narrows intermittently or collapses because of stress and can be kept open without angioplasty by removing the stress (e.g.glutens, aspartame, mercury fillings, mother, food intolerances, cold, flus, toxins, ambition,) and enhancing blood circulation (massage, acupuncture, acupressure, kinesiology, homeopathy, osteopathy, chiropractic, swimming, massage.) For these patients toxic MS drugs may aggravate the problem. This means Controlling MS. Individual solutions for the venous blood circulation problem can be as varied as the multiple stress factors which trigger it. That is why what works for one MS patient may not work for another.
If there is a serious vein blockage, then opening up the circulation through angioplasty would seem essential. In that case, before treatment, exercise or massage etc may actually exacerbate the blood reflux and the injury.(Think of blood backing up into a closed channel) In that case the patient would still need medication until they could get relief by opening up the circulation. So it makes sense that before intervention exercise would actually make you feel worse.

I don’t see how a double blind study can account for all these variables, especially since only one third of patients can really benefit from angioplasty (and even that is in doubt.) Those who need it should be free to do so and their insurance should cover the procedure. At the very least diagnostic tools should be made available to identify the likely candidates. Far from protecting them, I believe the FDA restrictions are condemning the most seriously afflicted MS patients.
I'm glad to know you received treatment and it worked. Are patients now having trouble getting treatment since the FDA actions slowed research? Thanks for your feedback

The FDA has not banned patients from seeing doctors or even banned the procedure from being done by a specialist. What it has done is to withhold permission from some randomized prospective trials, that they possibly thought were being done under group and other IRB approvals, without a permission slip called an IDE or Investigational (had to add that to my dictionary) Device Exemption. The IDE allows the trial to be prospective (outcome unknown) when they are using devices such as catheters and stents.

What I think that does, is to hinder research, and perpetuate the statement that the use of the catheter or stent on a vein is "Investigational" or experimental, when the only thing under question is its effect on "MS".

These pw"MS" have been saddled with fighting bureaucrats, turf-scared neurologists, the AMA, the CMA, the MS societies, judicial and quasi-judicial organizations, drug vendors, professional associations (the list goes on), to make this procedure a legal entity for those with "MS", paid for by their paid insurance premiums.

The FDA has succeeded in slowing research on the procedure to a snail's pace in the US. But they have not banned, and have no power to ban the procedure itself. Many doctors believe the FDA are acting in the interest of the patient. Unfortunately, nobody speaks for the Patient, without having a financial interest to protect.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Thanks for the clarification. I'll have to correct my statements accordingly. I do think the FDA action sends a negative message to practitioners.