CMT affects the Peripheral Nervous System (PNS) everything outside of the brain and spinal cord. CMT is the most common type of inherited neuropathy. It is listed on the MDA site with about 40 other diseases. (It's under the umbrella of the MDA as we say). However, it is not the same as MD where you are born with diseased muscles and MD is of the Central Nervous System (CNS). Much research is being done concerning CMT. A person who has CMT is born with healthy muscles. If they inherit the gene then it's when symptoms might become evident. You can be young, old, or in-between when symptoms might appear. Or symptoms might never be that evident and be attributed to something else such as RA. CMT symptoms vary greatly even within the same family. You can have high arches, flat feet, or normal feet. Some peoples hands and arms are affected as well as their feet and calves. And it certainly can affect other parts of the body as it progresses. And CMT does progress.

On the other hand, MS is an autoimmune disease (body attacking itself) and it is of the CNS.

CMT is has been misdiagnosed as Frederick's Ataxia, MS, Polio, you name it. Sadly that still happens today. CMT is inherited. It does not come from the environment or triggered by it. There are rare mutations. As of 2008 there were 50 types of CMT identified so far and there is no end in sight. There are people out there who have PN and it very well could be a type of CMT but they are not diagnosed. It might be a type which they do not have DNA blood testing for as of yet.

CMT is a very complex syndrome. There is no cure/treatment for CMT. No magic bullet, no supplement, no nothing. Maybe one day they will find a cure/treatment for a type of it. CMT1A is the most common. An expert neurologist who knows CMT and family history are a plus.

Kitt
(CMT)

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On several points:

Before I got PN, I already had anxiety issues from certain things in my life. Locally, I'm a popular artist and writer of horror and science fiction and when I felt too anxious, I could get some relief by doing my art-thing.

I noticed that my best days are when I am not letting the worry get to me and just go about my life. I genuinely agree so much that worrying does not help in any way. I seen a saying recently that I decided to remember:

"Worrying about tomorrow only ruins today's peace!"

Man, there is so much truth in that adage. But it's hard for me. Being as how I had an anxiety condition before my PN, this only made my situation worse. But I do quite well, most of the time.

For me, I feel that I did get the right diagnosis. 3 different doctors from different hospitals believe I got my PN from Cipro. This probably because they seen this before and they were E.R doctors, untied to certain formalities. (1 was a young neurologist).

He was so accurate about it, that it seems he predicted my symptoms over the next year in their very order. (He is the one that believes I'll be "close-to-Normal" within another year.) I hope that is true, I did get so much better within the last year. Thank God.

They say I got PN from being prescribed Cipro along with Alieve (Naproxen), while I was taking Clonazepam (an anxiety Benzo). Apparently, this is well known in the medical community as a lethal mix for the CNS system. So much so, it can even be seen now on Wikipedia along with many, many other webs sites.

This brings me back to what I meant when I said; "I see more ads and commercials about PN."

I seen them on television, not the net. They even have a phone number to call listed below it. I don't know if you've seen this yet, but it's the only one that I've seen thus far that is not about fibromyalgia, diabetic PN drugs, or lyrica. It's the first one I seen that addresses Neuropathy.

I can only imagine that this is unfortunately compounded by more and more people getting "Floxed" by harmful drugs.

However, perhaps there is a positive side to such sad circumstances. That would be that scientists/researchers will have to pay more attention and time in providing treatments and additional research in curing or creating products to relieve PN and its pain.

As for the impact and change it makes in our lives: My wife/girlfriend expects me to act the same as I did before I got PN, and that is the main problem with us. She does not understand the condition, and worse, simply does not want to. (I've tried to explain it several times.) So, I just have to keep pretending to be the same, which is not fooling anyone.

Still, she is right about not wanting to get sucked in by it. I love her and my family, so I don't want them to be affected by this madness - it already destroyed my life so much, I do not want it affecting them.

The other day, 2 gang-bangers threatened to rob me near Food-For-Less. I put down my groceries and got into a fighting stance. They looked at me strange and just walked away laughing. Funny for them, I'm sure - but I'm certain had I let out my full fury over a year's worth of PN pain on them it wouldn't have been so funny!

Before, I would have been upset or frightened by this - but I was not. What could they do to me compared to PN? A part of me truly wants to be killed. I'm not saying I'm always depressed, I'm quite alright most of the time. But I think there might be a part in all of us that's just a tad bit suicidal. So ordinary threats like that seem to loose its power on people like us.:mad:

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Hi Jesse
 

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. :Sigh:

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.

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I don't know what CMT is, but I've heard of it in passing. From what I gather, you guys are saying that some type of inherited disease (CMT) can be induced or brought out by certain medications - is this correct???

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On another note - I been braving high humidity mixed with thunderstorms over the last week or so. I spend a lot of time with my granddaughter, riding bicycles and playing in my yard outside, despite the last 2 weeks of heavy humidity, insane mugginess and sporadic thunderstorms. I have NOT been having those week-long flare-ups anymore, but just random micro-flare-ups during the day that fade out after about an hour or so. I'm so very glad about that -thank God.

I figure I'm doing quite well, considering the bad weather and all. I should stay in during this type of weather, but here, in Chicago, our summers are so short - so, I refuse to let the bad weather ruin our summer time.

I'm not sure if any of you can relate with this stubborn notion. LOL