NeuroTalk Support Groups - Charcot-Marie-Tooth Disease (CMT)

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Quote:

Originally Posted by bumpy_road (Post 890812)

Hi,
I'm so happy that I found this site, this is great. It's going to take me a bit to look through all those articles. I was diagnosed with CMT type 2 a few years ago, I'd have to go through my paperwork to find the exact year.
I had my blood DNA tested at the UBC Faculty of Medicine, and had lots of tests done within a two day visit. My Mother has it too, but not as bad as I do, and my son who's 21yrs old now still won't have the test done. He has a 50/50 chance of having it but he's a little afraid to find out I think, no symptoms for him yet at least. Mine are getting worse every year, It's hard to type with one shakey finger due to my hand muscles not knowing how much to tighten up. I now have a wheelchair, a walker, and my cane to get around. I don't go out much any more.
I also have Ehlers-Danlos Syndrome type 2 or 3, they can't make up their minds on that one, but my joints are'nt very stable, sometimes they can fall out of place with no warning, I have to be careful. Having CMT and EDS at the same time is not fun. It seems that any damage my body goes through, the pain sensations stay. I've had two minor knee surgeries, a couple of sprained ankels, and some arthritis, all still feeling like they just happened. The only pain meds I can take now is extra strength Tylenol, my body adaps quickly, It was hard to stop the narcotics, but It's been three years now. I also have major depression and anxiety issues. Too many other things to count as well. It's day to day,maybe I should have typed this somewhere else but I'm rather new to forums in general, and this took an hour to finish, I'm not to keen on starting over, oh well. Thanks again on all the new info, hope to talk with someone soon. Take care.

Thank you for your post. In regards to testing, especially someone with no symptoms, it is up to the individual. It really is a personal decision. In another post I have mentioned about trying to obtain insurance, etc. with something like CMT or arthritis or a number of other diseases. However, he should still learn everything that he can about CMT. Knowledge is power.

I wish you well.

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... ;) In Sweden the Goverment of Health issues say that vitamin D3 in blood shold be 75 nano.mol/litre or higher. Several test have shown that especially YOUNG people have a rate of vitamin D3 that is around 20-30 nano.mol/litre blood - and that it causes danger to the body. I tested myself and had 126 nmol/L. But my friend told me that I had to upper my D3- intake (no I do not sun-bath, because we rarely have sun in Sweden...) to at least 200 nmol/L. So I now take (orally) vitamin D3 supplements to upper my D3 cencentration in my system. 2000 IE (International units) per day is a too small doses of intake, so I've been ordered by my friend to take 50000IE 2 times a week, and then a capsula of 50 000IE once a week - to perhaps do someting positive for my CMT! My whife takes 5000IE/day, for her artrithis and arthroses, - and who knows where we will end? For ME - I have no other options but to try. I have opium as a pain killer from my doctor in neurology, but nothing else. But if I should take what the government says it would be like maximum 400IE/day. As for now I'm ok, am beginning to feel my feet again, believing that the D3-vitamin had someting to do with it. No, not B6 - that is nothing for us with CMT! But D3 is not THAT dangerus for us, perhaps even someting that we benefit from in the long run...?

Sp - just my 2 cents from Sweden...! :p (Sorry for my bad English...:p)

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.

'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...:cool: Even if gets worse I know what NOT to try anymore...:) But it SEEMS - that Vitamin D3 in megadoses have a positive effect on fx MS, ALS, heart conditions and so on. At least, if your levels in blood when it comes to vitamin D3 is too LOW ( in Sweden <75 nmol/L) you'll end up having a lot more than you can handle in the long run...
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...:rolleyes: But in MY life something positive is happening. And i hope the resurge(sp?) will tell me IF I'm wrong - or WHY it helps me like it seems to do...:) I'll keep you all posted on what is happening to me when I stuff myself with vitamin D3!;)
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...:rolleyes:
*edit*
Just my 2 cents. hopefully I'll get a lot of responses! :D

Hereditary Neuopathy with Liability to Pressure Palsies (HNPP).

http://www.hnpp.org/

Bumping up - Cold hands and feet CMT

:bump: :bump: :bump:

Cold hands and feet and why when you have CMT.

http://www.cmtausa.org/index.php?opt...15&Itemid=50#6

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.

The article as far as CMT goes....

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.

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.

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.