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08-10-2010, 07:27 AM | #1 | |||
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Magnate
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I have MS and TN as well (TN probably was my 'onset' symptom, it was actually diagnosed long before the MS was, confirmed by various docs since).
My medications seem to keep it mostly in check, and I know my main triggers, but I still occasionally get the 'take my breath away' ice pick stabbing, shooting pain throbbing in my head/face (left side mostly, but I've had it occur bi-laterally). Going under the knife for it, I probably wouldn't myself, but that's just my own personal experience with it. I know how to 'calm' the beast for me now, and that includes therapeutic hot bathtub soaks (I know, hot bath, MS nightmare, actually helps my TN big time!). Thanks for the info Lady!
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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08-11-2010, 12:43 PM | #2 | ||
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Member
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"Microvascular" sounds familiar to me. I have another painful condition caused in some
way by microvascular problems, in my toes and forefeet. Because I have Polycythema Vera, I have thick blood, i.e. high red cells and platelets, which must clog the little vessels in my toes. The result, a painful condition called Erythromelalgia, with stabbing pain, burning pain and numbness. The numbness contributed to my fall in May, which broke my kneecap, which I have been recovering from for several months, now in an Assisted Living for a month more. Now walking without a cane a little bit. Since I also have MS and Porphyria dxs, I am used to having neuropathic problems, but never realized that they could be caused by vascular problems. This has become more familiar to me since my PV dx 5 years or so. I may need to take Interferon to lower the counts. The idea that neuropathy can be caused by vascular problems is now VERY familiar. For years, I have taken a small amount of niacin (non flush) to control the paresthesias in my temples and the fogginess in the eyes, which come on if I do not have niacin. I don't know if niacin helps the erythromelalgia in my toes (numbness, pain). Not much, it seems, but possibly this would be worse if I did not take the 250 mg of niacin a day. I can't take the drugs which "control" neuropathy such as Lyrica. Sensitive to all of those. I know of no means of operating on the microvascular structure in the toes--probably too small? |
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08-13-2010, 01:37 AM | #3 | |||
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Senior Member
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Mariel you could have CCSVI. Did you consider that?
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LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
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"Thanks for this!" says: | dmplaura (08-13-2010) |
08-18-2010, 09:49 PM | #4 | ||
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Member
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Lady, I just googled this, and I can't tell from first reading if it would have anything to do with me. For one things, I don't think I have any occulusion of jugular veins. Mine are always
very clear. On the other hand, I had a PET scan many many years ago, one of the first, which showed low blood flow to the brain, within the brain, not in the vein leading up to it. I believe the PET scan was pre every dx, and no one dx'd anything from it except Chronic Fatigue, which was about all anyone could come up with in those days for me....but soon afterwards the eye problems brought an MS dx (blind spot, double vision, narrowed visual fields). I just don't know if I could have this. What is more easily clear is that I have Polycythemia Vera, which can cause mini-strokes, and that could account for occasional dimming of eyes, which is helped by the niacin which opens the vessels. I am JAK2 Positive, so that is a definite dx, much easier to get than MS or Porphyria. |
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"Thanks for this!" says: | dmplaura (08-20-2010) |
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