i have those difficulties walking uphill and upstairs and am awkward walking downstairs. im officially ideopathic but pretty sure i have a toxic cause for my sensory motor axonal PN. im surprised because i never read before in 11 years that these were indicators for cmt.

echoes long ago,

Check this site out. Maybe it will give you some idea about CMT.

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

There are many, many types of PN so it would be hard to tell without some further tests as far as CMT. Family history can also be a factor and help with a diagnosis. EMG/NCV testing can tell if a person has CMT 1 or CMT 2. And of course DNA blood testing for the types that they can now test for. That can also tell the sub type. CMT 1 shows as slower than normal nerve conduction speed. CMT 2 shows near normal nerve conduction speed or mildly slowed.

Unlike Susanne C. symptoms of CMT did not become evident until much later in my life. I could do anything and everything and I did for a long, long time. The symptoms varied greatly in my family and that is expected. No CMTer is alike.

I am not young either. I'm grateful that symptoms did not show up for a long long time. And then they weren't that bad at all. However, CMT did progress as it does and in the past three to four years CMT has really progressed for me. It has robbed me of much and continues to do so.

I do not need any heavy exertion such as walking fast (can't do anymore) to have my feet/legs feel like cement, can't run anymore in fact for the past say 18 years, going up hill is much easier than going down hill. That's the reason why I go down the few steps backwards using hand rails in my house. It is easier to do it this way as I've heard other CMTers say. I'm sure that's due to that peroneal muscle being affected greatly. CMT is of the PNS (Peripheral Nervous System). They now are finding it affects other places - depending on the type.

I cannot move my toes hardly at all. They are getting to the point of being numb. My feet/toes are very, very sensitive. I can't stand much covers hanging on my toes at all. I cannot stand on my tiptoes or my heels and have not been able to do that for years either. If I am on the floor I have to use a sturdy piece of furniture in order to get up. That's happened quite a few years ago. It's all progression of this wonderful (NOT) CMT. But you know that aging also comes into play as well and that is true for the general population as well.

For more information on CMT check out my site on CMT. At the top of this forum click on "PN Tips, Resources, Supplements and Other Treatments.

There is no cure/treatment at this time for CMT. Just no special diet, supplement or magic. A person has to deal with the symptoms as they come along. You can build up good muscle but not diseased/atrophied muscle. I also got AFO's a year ago now. They help some but I still use a cane and/or an arm. They are the least supportive kind for now. You lose more good muscle wearing them as well. But there came a point where I had to get them. These are called Toe Offs. I take them off around 7:00 P.M. at night. At some point I will have to probably have casted AFO's. Time will tell.



Hope this helps.

thanks for the link. i had checked a few sites this morning but everything was worded vaguely in the symptom department. weakness, atrophy etc.

ive had 8 emg/ncs's over the years. no family history at all. we had one big family reunion a few years ago and I was going around to everyone, hey do you know anyone in the family who had any of these symptoms....ha!

i have the toes dont flex much at all thing also.

i guess all of these causes have many symptoms that overlap since they are doing basically the same type of damage to the same parts of the nerve as other causes. What caught my attention was the walking with cement legs comment. I describe it as my legs becoming as heavy as tree trunks to lift and they super fatigue quicly. I have not really run into or read too many people with PN having that symptom over the years. A few did but most dont. And like i said that was my earliest symptom besides some numbness.

Thanks susanne and Kitt for taking the time to answer.

The Wiki CMT page says 1 in 2500 have CMT...in some variant.
Making it one of the most common genetic diseases.

This article explains that pain tracts remain intact.

http://en.wikipedia.org/wiki/Charcot...3Tooth_disease

I wonder if the 23andme DNA test will reveal this? It is much much less expensive that the tests at Athena.

Do you know about that, Kitt?

This is the criteria used in the Vit C study.
http://www.mda.org/research/view_ctrial.aspx?id=186
It does not state what type of oral Vit C was used. I wonder if the liposomal or IV type would boost any potential results?

This paper does not give details as to what form the Vit C was in when given:
http://www.ncbi.nlm.nih.gov/pubmed/21393063

Some recent research about Vit C... so they are still looking at it:
http://www.ncbi.nlm.nih.gov/pubmed/22114285

CMT is the most common "inherited" peripheral neuropathy. The trouble is that it is misdiagnosed as polio, MS, Fredrick's Ataxia, etc.

I looked up 23 and Me and I do not believe that it would be testing for CMT. As I've said before I have heard that Athena Diagnostics pretty much has that testing sewn up and they are very expensive. There are papers to sign, etc. and they should be read totally and understood before a person agrees to it. Sometimes insurance will pay and other times they won't. DNA blood testing is good if you want to know the sub type. Not really necessary in my view as there is no cure/treatment for any type of CMT as of yet.

Sometimes the DNA testing will neither rule in or out a type of CMT. The most common types CMT 1, CMT 2 and CMT X would be pretty readily interpreted. But others, and there are more than 50 types aren't so easy. Even if the test shows you don't have it, you might if that makes sense. It just might be a type that they do not test for as of yet.

In 2008 from a reputable source stated that there were more than 50 identified types of CMT and no end in sight. CMT can pretty much be separated into two kinds - the "demylenating" forms (CMT1 and CMT4) and the "axonal" forms (CMT2, autosomal recessive CMT2, HSAN, and HMN).

The Vitamin C studies have never panned out. I can't remember off hand the dose given. One trial in The Netherlands used 4 capsules of 250 mg. twice daily equals 1000 mg. during a one year trial. A placebo was used on some and no one knew what they were taking. In some of the trials elsewhere as well people had to get out of the study due to adverse effects, etc. These studies were for CMT1A only. There was much criteria to get into the trials. Other places in the U.S. did a two year study. Here is a site:

http://quest.mda.org/news/cmt-vitamin-c

They have also been doing trials on CoQ10 and CMT. Nothing proven here either.

These trials have not been in the U.S. alone but all over the world.

Your second site on Vitamin C (Ascorbic Acid) trials pretty much says it all. There is really no significant effect. Some CMTers have tried taking a lot of Vitamin C on their own thinking that it could do something for them. But it's in vein. There is much that goes into these trials.

CMT is really considered a rare or orphan disease and some other diseases as well so there is little incentive for drug companies to develop drugs for it. CMT is all over the world. Time will tell.

A mega dose of Vitamin B6 has a moderate to significant risk for CMTers.

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

And also there is more information for everyone. It's under the fact sheet by Vitamin B6.

http://ods.od.nih.gov/factsheets/Vit...ofessional/#h7

I had read this before but not thoroughly. I find it interesting.

I just noticed the mention of axonal. CMT type 2 is axonal, which is what I have. As Kitt mentioned CMT is also called hereditary sensory motor neuropathy. It seems as if everyone with CMT has trouble with stairs. The first muscles to be affected are often the ones that lift the foot, which is why so many people wear ankle-foot orthotics. My half- sister wore leg braces from childhood, and I am planning on going to an orthotist as I am dragging my feet more lately, which will lead to a fall sooner or later.