Hi,

There is good coverage of CMT in the latest Quest magazine. If you do not get the magazine you can go to the MDA site.

http://www.mdausa.org and then click on Quest magazine. It is a good read.

I know of a person who they thought had CMT but indeed has cerebral palsy. I am not certain if this person also has CMT or not. It is possible to have CMT and other diseases as well. CMT is misdiagnosed to this day as something else.

A neurologist who knows CMT might be able to help you rule CMT in or out. I wish you well.

There are many conditions that have PN as a component. I think it is important to validate the PN, with the many possibilities that it can encompass, and there are many.

We do all have a unique DNA print, and yes, we are all special, then again, we are just one of almost 7 million.....a good number of us, with some kind of PN.

As a newbie, I resemble that remark!!! LOL... I'm actually glad that I've found this site... It's nice to hear from "like" people... Even though every one here is different, at least I don't feel like I'm a statistic... sounds like some people here at least know the cause of their neuropathy... I don't have the $$$ to get the genetic testing (At least $15k per shot)... I found it most troublesome to be an idiopathic (I call it idiodic) neuropathy number... I guess mainly because I don't know what caused it... I'm worried that my kids might have it... and don't want them to go thru what I've been experiencing for the past 5 years...

Ed,
Genetic neuropathy is in the minority of causes as there are over 200 known causes for neuropathy. Most of us fall into the overall general terms of :
toxic- anything from alcohol to penicilin shots or flu shots, exposure to chemical from the workplace to the garden, and everything you can think of in between
compression- pinched discs to botched surgery that the surgeon won't admit to
environmental- something causes an allergy or some sort of reaction that acts as a trigger
inherited- the biggest group is middle European klineage and descendants, but is not exclusive there
and a few other miscellaneous things.
'Glenntaj', here- has a lot of info on all of the causes

The main thing is to identify the triggers that cause the severity or onset of symptoms, identify the types of symptoms, and try to find a med or supplement, or something that helps alleviate symptoms & pain. since there is no cure, yet- searching for the cause can be an expensive road that could lead to a dead end, or at least a stop sign that says "Road under construction you can go no farther."
Be content to treat symptoms and not fret about whether your children will get it. Worry about yourself and get your head under control regarding acceptance and experience of treatment as to how to live as normal a life, with PN. If you had diabetes, you'd live with it -and the treatment necessary to live normally. You won't necessarily know why you got the diabetes, but you have it.
This is no different.

Interesting that you said "exposure to chemical from the workplace"... This started happening within 3 months of when my department moved from 1 building to a newer building. I'm wondering if something here (IE carpet, glue for carpet, paint) or something else here could be causing it? I have been tested for heavy metals...

I'm a software developer... so, I wouldn't be exposed to some toxic chemicals in other professions...

Many new buildings are filled with toxins...

Formaldehyde is one.
http://www.oxford.net/~steve/sick.htm
If you suspect formaldehyde, using Benfotiamine may help.

Some here have been discussing chlorine found in pools:

http://neurotalk.psychcentral.com/sh...light=chlorine

Also try going gluten free for a few weeks, see if that helps.

Also do you get alot of dry cleaning of clothes done? If so air out the clothing outside for 2 days before wearing.

Also the chemicals used by the cleaning crews in buildings,
at night when you are not there- or during the day, if they work around people while they are working at their jobs , could be a trigger too.

Bump up for Melody

I am a newbie and not sure where to begin: I had fusion of L4-5 spine and laminectomy almost 5 years ago. The surgeon said he had never seen such an angry red nerve. I was still left with pain. The doctor said to wait about 10 mos. or so and I might consider a stimulator implant. (did a trial about a year ago without success.)

During all this time I had been on narcotics to help with the pain. Eventually ended up with a Pain Specialist for the spine pain, as well as leg pain. Due to all the narcotics (oxycotin,percocet, plus) developed constipation which eventually caused a bladder prolapse. Within a week or so after the surgery for the bladder; developed swelling of feet and legs (edema). Then discoloration of the feet began (Stasis Dermatatis)
I thought the terrible burning pain in my feet &ankles was due to the Statsis and swelling. Leg pain as well. Had started difficulty balancing and started using a cane. I mentioned this to my internist/endocrinoligst.(had been hyperthroid eventually became hypothroid -take synthroid). He felt the burning pain,etc. was from my pheiphereal neuropathy. No one had mentioned this before. I began looking up info about the neuropathy. Also, was led to a website for Periphereal Neuropathy. I could see myself and things started to make sense. Also heard about mehyl B12,R-Lipoic Acid and B Complex. I started using these vitamins about 3 weeks ago. So far - no change. I see my doctor in a couple of weeks and have lab work done the week before. Called his office to inform them of the B12 vitamins and asked to have that added to my lab work.
Was thinking of trying Benfotiamine B1 because that was also mentioned. I am using these vitamins in an effort to help nerve regenerating. Am I on the right track using these vitamins? This is longer than anticipated; but Mrs. D, you had mentioned "newbies" leaving out info. Hope I didn't overdo it.

Mrs D is on holiday, just in case you are wondering why she hasnt replied to you.