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Old 05-15-2012, 05:30 PM #1
Mariel Mariel is offline
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A few years ago, on this forum or elsewhere, there was a presentation that MS may not all be auto-immune, but some kinds could be chemical. I have carried this one step further, to think that one form of chemically initiated MS could be from Porphyria, the second disease I was dx'd with. Porphyria could produce a chemical assault on the brain, but does not seem to make myelin scars in everyone; an "expert" estimated 17% of those with Porphyria have the white spots shown on MRI.

As for athersclerosis, I have been tested for this over the years. When young and having MS symptoms, very clear arteries--a doctor who did a test said "I wish I had your arteries, like a teenager's." Then later, in old age, I have slight athersclerotic narrowing, or whatever you call it as it has not been discussed at length with me, but it is slight. I was tested for this because of my third disease, Polycythemia Vera, which produces "thick blood." I have to thin my blood with phelbotomies and now p32 and aspirin, but I don't have significantly narrowed arteries. I do have pain in my microvessels in my feet if I let the blood particles get too many. Very bad pain there but nothing else of vascular pain.

It is fascinating to me that Dr. Swank, whom I saw 24 years ago, believed that we with MS have slow moving blood. Blood particles stick together more readily, and one can see this on a microscope. He showed me my blood particles sticking and moving slowly,
and confirmed my previous MS dx. For a while he was treating MS patients with transfusions from normal-blooded relatives. He insisted on relatives or very close friends to avoid contaminated blood. I was too sick at the time to go through the hoops to drive to Portland and have my husband go with me, and my husband was working at that time, and it would have been a hardship, so I never tried this. One also had to take Benadryl to avoid allergic response to even the relative's matched blood (Irv's and mine were a match) and I knew I would become ill from Benadryl. Later my becoming ill from Benadryl was explained, because people with Porphyria can't usually take it (I can take Zyrtec instead).
Dr. Swank said that some MS patients who had not been walking started to walk, even wearing "heels", after the transfusions, but they lasted only about five months. Not a cure.
Swank was such a wonderful researcher and got little support for doing it. He got more support in England and was doing research there, and my blood was sent there, among others, for his research. But I don't think he completed that. He died at about 97 a few years ago, a great man who was appreciated by patients but not enough by other doctors.
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Old 05-15-2012, 09:41 PM #2
msarkie msarkie is offline
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Hmmm, metabolic disorder. I know I had off the charts high triglycerides a couple years after dxd with MS. I had to take meds for awhile but have it under control with diet now. My HDL and LDL were completely normal. Anyone else?
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Old 05-15-2012, 09:54 PM #3
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msarkie, I have high triglycerides and low good cholesterol. The low good cholesterol is common to most patients with Polycythemia Vera, my third disease. No one knows why.
Or if they do they aren't telling. Porphyria is called a metabolic disease, although it's also called a blood disorder, and neurovisceral disoder....I therefore don't contemplate MS as a singularity any more and can't which which did what in every case.
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Old 05-17-2012, 06:47 PM #4
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Quote:
Originally Posted by msarkie View Post
Hmmm, metabolic disorder. I know I had off the charts high triglycerides a couple years after dxd with MS. I had to take meds for awhile but have it under control with diet now. My HDL and LDL were completely normal. Anyone else?
I too had high triglycerides and HDL, although I have lowered these considerably by cutting fat in my diet. Still, now that my numbers are down (not quite "normal" yet), I am still having MS symptoms that are persistent. Could it be that once the damage is started, it doesn't go away, even if the original problem is corrected?

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Old 05-18-2012, 12:15 AM #5
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Some damage to nerves is permanent. I guess I should say damage to brain or spinal cord, felt in the nerves. Some of it heals. But being on a low fat diet is very important for some kinds of MS, like mine. I was a patient of Dr. Swank who made the very low fat diet for MS well known. I probably will never get rid of high triglycerides. I can't take any of the meds that do that.
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Old 05-18-2012, 06:55 AM #6
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my first recognizable sign was polycythemia. They spoke of donating blood to throw it away, and other interventions. I quit smoking (see other thread) and it went away. My MD said she rarely saw that condition just go away.

Its been a round robin of medical BS. From low BP to skin conditions to dry eyes. I hate this stupid disease.
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Old 05-18-2012, 09:55 AM #7
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Good grief, Dejibo, what are you saying, that polycythemia is indicative of MS? I don't think so...are you saying you did have it? Perhaps you had the kind which is symptomatic of a disease process, not a disease in itself. That IS called Polycythemia. But what I have is Polycythemia Vera, a disease in itself which is supposedly caused by a mutation in the bone marrow, cause unknown. It can be 95% verified by a test for the Jak2 mutation, which may not be the only mutation involved but is diagnostic. Why don't you have this blood test--it's easy, wait for results, and an easy diagnosis unless you are among the 5% who have to wait for other confirmation.
Yes, I have my blood thrown away periodically. Keeps red cells lower. Took p32 to lower platelets, which worked. Since you are like me, drug sensitive to many drugs (not all) you probably could not take the chemo for this. You could take the p32 and phlebs.
Well I won't go on as this is a mystery I can't understand, what you have said. More?
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