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Charcot-Marie-Tooth Disease (CMT)

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Unread 05-06-2010, 04:59 PM   #1
Kitt
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Exclamation Charcot-Marie-Tooth Disease (CMT)

Charcot-Marie-Tooth disease (CMT) is also known as Hereditary Motor Sensory Neuropathy (HMSN). There are many kinds of CMT (about 50 identified so far and there is no end in sight. They have DNA blood testing thru

http://www.athenadiagnostics.com/content/index.jsp

for at least 22+ types so far. The testing has been around since 1991. Before that there were no types of CMT. It was just called Charcot-Marie-Tooth disease (CMT) or Peroneal Muscle Atrophy.

Symptoms of CMT can become evident when you are young, old, or in-between. Or symptoms might not be that evident. CMT symptoms vary greatly even within the same family. CMT is inherited although there are "rare" cases where there is a spontaneous mutation.

Much research is being done but it will take years for a cure/treatment to be found. Then it will take much more time to develop one.

Here are some sites which may be of help.

http://www.charcot-marie-tooth.org/a...t/overview.php

Here is a Medic Alert list which is very important for someone with CMT.

http://www.charcot-marie-tooth.org/med_alert.php

Here is an important link concerning anesthestics for a person with CMT.

http://www.lindacrabtree.com/cmt/ane..._article1.html

Hereditary Neuropathy with liability to Pressure Palsies (HNPP) is the opposite of CMT1A. With CMT1A there is a duplication and with HNPP there is a deletion.

http://www.hnpp.org/

I hope that this will be of help.

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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."


Last edited by mrsD; 10-22-2012 at 09:15 AM. Reason: fixing Linda Crabtree link with new address
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Unread 05-15-2010, 07:12 AM   #2
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Here is an interesting story which appears in today's Health News headlines here on our forums:

http://abclocal.go.com/kabc/story?se...lth&id=7442797

Popular actress discusses her CMT challenges. Julie Newmar
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Unread 05-15-2010, 08:54 AM   #3
Kitt
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Default Julie Newmar

Yes, Julie Newmar has CMT. I read an article about her quite awhile ago. A milder form of CMT (some types are bad from the start) is mentioned in the article. That remains to be seen due to the fact that CMT progresses no matter what you do and no matter which type you have. It will be interesting to see how she does end up. Time will tell.

Symptoms of CMT can become evident when you are young, old, or in-between. Or they might not be that evident. But, CMT does progress.

Thank you for bringing this up.
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."


Last edited by Kitt; 05-15-2010 at 09:13 AM.
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Unread 05-15-2010, 08:59 AM   #4
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Default Todd MacCullouch

Another one is Todd Muccollough who played for the Philadephia 76er's. It would have been nice if he would have been a spokesperson for CMT but that did not happen. He tried to do everything he could in order to "fix" the symptoms and be able to play but in the end, that did not happen and he had to give it up. He found out that CMT is progressive no matter what you do. This was a number of years ago.



http://en.wikipedia.org/wiki/Todd_MacCulloch
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 05-18-2010, 06:24 PM   #5
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Arrow Vitamin D

This is something I had never seen before. Apparently a person with CMT should not take too much Vitamin D in pill form. It can affect the PNS. What you get naturally in foods and the sun is fine. It is listed toward the end of the article along with drugs to watch out for. It does not say how much is too much.

http://emedicine.medscape.com/article/1173484-overview I found it interesting.

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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 05-20-2010, 09:42 AM   #6
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Quote:
Originally Posted by Kitt View Post
This is something I had never seen before. Apparently a person with CMT should not take too much Vitamin D in pill form. It can affect the PNS. What you get naturally in foods and the sun is fine. It is listed toward the end of the article along with drugs to watch out for. It does not say how much is too much.

http://emedicine.medscape.com/article/1173484-overview I found it interesting.

I cannot edit or change the above. Apparently the above may not be true. It is a reputable site but from another "very reputable site" for CMT, they say there seems to be no problem with Vitamin D. (Of course, there is with Vitamin B6). So, in saying that, who really knows. It makes a person really wonder about it all
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 06-22-2012, 10:33 AM   #7
Nils-Arne
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Chat Vitamin D3

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...! (Sorry for my bad English...)
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Unread 04-11-2012, 01:20 PM   #8
Kitt
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Arrow Charcot Marie Tooth Syndrome

Here us a site explaining some of it.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

Another site for Athena Diagnostics.

http://www.athenadiagnostics.com/content/index.jsp

Another site.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

Genetics and Inheritance.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

And another site.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

You can have flat feet, normal feet, or high arches. It depends on muscles involved. Hands and lower legs and feet involved. Or just your lower legs and feet. Or just your hands. Or finally both. One just doesn't know.
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 04-19-2012, 02:02 PM   #9
Kitt
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Arrow Charcot-Marie-Tooth Syndrome, etc.

Here is another site explaining the difference between MS, MD, and CMT.

http://www.lindacrabtree.com/cmt/bas..._article2.html
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 04-19-2012, 02:05 PM   #10
Kitt
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Attention CMT Medications List.

Medications List. Very important for people with CMT.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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