I am sorry you have PN. The words you describe it with are very accurate. I beleive it is environmental as MrsD does. Try to get on some good vitamines, especially B12. This has helped my own PN. We are all here to support you. There are alot of members who have this, and can relate. I wish you all the best, and less pain. ginnie

Perhaps for other types of PN but not for CMT.

The literature currently has articles like this, demonstrating drugs or other things triggering CMT symptoms in otherwise asymptomatic patients:

http://www.ncbi.nlm.nih.gov/pubmed/8600343

http://www.ncbi.nlm.nih.gov/pubmed/11442172

http://www.help4cmt.com/articles/?id...scular-disease

Levaquin unmasking asymptomatic CMT:
http://www.theannals.com/content/45/10/1312

While environmental events do not CAUSE the genetic mutation itself, it seems that they can trigger symptoms, in people who don't know they have CMT until the event occurs. Some people live without knowing they have CMT because onset varies so much between patients.

The first site talks about Vincristine. It is one that a person with CMT should never ever have. It also does a number on some of the general population. A young man (non CMTer) in our town had it and it was awful and stopped. It is on the medications alert.

The third site talks about Allison Moore. I know of her. Her father had CMT and she inherited it from him. It was a combination of three drugs one being Vincristine that she took for cancer in her leg. This set it off for her. Had she known that you should not have Vincristine she might not be wearing AFO's today and CMT would not have progressed so rapidly in her case. She has said this herself in a video on CMT. There were signs of her body which should have been caught much sooner along with the family history. She had high arches (not everyone with CMT does) and she couldn't stand on her heels. This was much earlier in her life. The Vincristine did a number on her for sure.

We were told at one of our support group meetings by an expert neurologist who knows CMT that if we were given Vincristine we could end up just laying there and not be able to do anything much at all.

The fourth site is one I have read before. It talks about the "possibility". And this person had plenty of symptoms beforehand.

Not the environment, so to speak, it's the medications these people had that brought CMT to light even though there were other signs which apparently were not recognized at the time.

I totally understand. Kitt... drugs are part of our environment.

I guess we just disagree on that?

Take a person with latent CMT... 100 yrs ago. They get cancer, and there is no vincristine... so they die of the cancer. Today they would be given this...and if they didn't know they had CMT, then they would react to it.

Chemo in general causes PN in non CMTers too. It damages DNA.
Only this action is more devastating to the CMTers than non. But both types suffer to some extent.

Environment to me is where you live. That's what I find. Yes, we do disagree. A person with CMT would more than react to Vincristine. They could die. It is deadly to us. That's why it is on the list and with the highest priority. It is definitely high risk. CMT was given a name in 1886. It was just known as Charcot-Marie-Tooth disease or Peroneal Muscle Atrophy and there were no types yet given. Not until about 1991 and then it was just CMT 1 and CMT 2. No subtypes of it either then.

Yes, chemo in general does cause PN in non CMTers. I do know enough people with that problem. In fact they are going thru it right now and others I know have died not that long ago.

We will just have to agree to disagree I guess.

There is much more in common with your positions, Mrs. D. and Kitt, than that contradict! Vincristine is poison for us, and Cipro, Levaquin, and Statins can cause sudden escalations, I have experienced several! It is really important that everyone be well educated about this subject of PN and medications in general. As Kitt said for CMTers it can be life threatening.

Both of you are really driving home the point that there is no substitute for knowledge, especially since our doctors are so seldom knowledgeble about drugs or able to help.