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#21 | ||
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Grand Magnate
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Quote:
I wish you well.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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"Thanks for this!" says: | bumpy_road (06-22-2012) |
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#22 | ||
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New Member
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As the Moderator of the Swedish forum for CMT I've just this day managed to pass all tests to be a member, and I guess I've someting to add to the vitamin D3 discussion here: A friend of mine, a doctor in GP, told med to try megadoses of vitamin D3. So I made myself a lab-rat...
![]() Sp - just my 2 cents from Sweden...! ![]() ![]() |
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#23 | ||
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Grand Magnate
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Your English is fine. Not to worry. I do not know how Vitamin D3 or anything for that matter can help you feel your feet again. There is no cure/treatment for CMT at this time as you already know I'm sure. Here is a site that is interesting.
http://www.mayoclinic.com/health/vit...xicity/AN02008 Thank you for your post.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#24 | ||
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New Member
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'Thank's for your answer! And YES I KNOW (!) that there is no cure for CMT! That is what I'm telling the Swedes *edit*. But - - that is why I try to test almost everything that PERHAPS can get me some kind of reaction to my CMT...
![]() ![]() My friend the doctor told me that it was muslim women dressed in black ("burka" in Swedish) that gave our doctors a hint, because they got a lot of problems with their health due to lack of sun, that is due to lack of vitamin D3. So my friend told me to TRY, not more than that! She gave med capsulas after my blood exam - capsulas containing 50000IE (!) to take 3 times the first week then one capsula a week. I have an advanced form of CMT2A, and I'm now "taken off duty" due to that. BUT - I have a little hope, that perhaps this will benefit me, because it SEEMS (this is controversial!) like MEGA-doses of vitamin D3 can (...) fix damaged nerves, as the body itself can, when it comes to fx stroke: New connections in the brain can minor the damage and make it - not perfect again, but much better! Me myself I don't know what to think, because this all seems like well... ![]() ![]() ![]() Once again, I apologize for my bad English... Swedish is ok, Danish and Norwegian too, even German, Hebrew and Greece (hä coinae dialektos), but we all have our weak spots... ![]() *edit* Just my 2 cents. hopefully I'll get a lot of responses! ![]() Last edited by Chemar; 06-22-2012 at 06:05 PM. Reason: Guidelines on other forums |
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"Thanks for this!" says: | Susanne C. (06-23-2012) |
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#25 | ||
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Grand Magnate
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__________________
Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#26 | ||
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Grand Magnate
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![]() ![]() ![]() Cold hands and feet and why when you have CMT. http://www.cmtausa.org/index.php?opt...15&Itemid=50#6
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#27 | |||
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Wisest Elder Ever
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Here is a link to some new research advances that may be
implemented soon: http://www.news-medical.net/news/201...e-horizon.aspx May be promising for other demyelinating nervous system diseases too.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#28 | ||
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Grand Magnate
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I checked with someone who knows more than I do about CMT. The person advised me that the article is interesting and said that I could quote what the person said. They mention the Po mutation, which is linked to CMT1B and CMTD13. It may turn into some serious help for those affected by those subtypes...and maybe more.
The person said that I was right in that it won't be any serious help next month, but they will add to a step forward, hopefully in the right direction. More testing on mice, the "newer" version that is human safe needs full testing, then the clinical trials will start...and if there is any indication of problems, they start over from scratch. One issue that ticked the person off, and me as well, is all the 'mis-information' that they give out in such 'reports'...CMT not affecting longevity..but it DOES in rare cases. CMT is due to myelin issues...in type 1 it is...but not all sub-types. Hope this clears some of it up as far as CMT goes.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#29 | ||
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Junior Member
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You mentioned b6 somewhere, are you talking about the high doses of b 6 causing more problems? I am curious as my blood work showed my b 6 being pretty much non existent.
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#30 | ||
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Grand Magnate
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With CMT a megadose of Vitamin B6 (defined as 10 times the RDA) may be harmful if taken as a supplement. Otherwise, high intakes from food sources has not been shown to be a problem.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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