ok maybe i am not as cold as you are thinking..i can warm up on my own with alot of blankets or lots of sweatshirts... i am going to ask my neuro about these tests thanks so much

Yes, they can. CMT symptoms vary greatly even within the same family if indeed it is CMT. It has been that way in my family. As I said symptoms of CMT did not start for me until my early 50's. Symptoms in other members of the family were at age 11, 30 something, etc.

I also know a person whose father wasn't diagnosed until he was 82. His two chilldren (grown now) one was in the 20's and the other in the 40's (years of age). It does vary greatly.

Symptoms may never be that evident but CMT (certain types) can still be passed on. Or CMT might be misdiagnosed as something else. It still happens today.

DNA blood testing is very expensive; especially if they do the whole panel of tests. You should give them a call and see what they have to say. Insurance sometimes covers and other times not. Read their policy very carefully before having any testing done. Just make sure you understand it all. I have not had the need to do any DNA blood testing. That would give me the sub type and I have no need to know that unless there is a cure/treatment. At the present time there is none.

The most common testing would be for CMT1 and CMT2. At least that is what I think. Don't quote me on that. You can ask them. You do need an expert neurologist who knows CMT.

There are two supplements that may improve muscle metabolism, and they are used by athletes and body builders to some extent.

1) one is d-ribose powder. This provides ribose (which is not common in our diets) to the mitochondria (energy cells in our body's cells) to make adenosine. Adenosine is part of AMP, ADP, and ATP. Hence more energy may be had when using ribose.
We have posts about it here:
http://neurotalk.psychcentral.com/post708792-40.html

Ribose is available in powder form, and used by the scoop. 5 grams to start is a typical daily dose.

2) The other supplement is called creatine. Many athletes use creatine to build muscle mass and strength. This one you have to be more careful with. It may affect the kidneys in high doses, and you need to stay hydrated well while using it. Creatine is also a powder, and should only be used in moderation IMO.
It has been suggested also lately for people with neurological problems in the brain, like ADHD, Alzheimer's and Parkinson's.
Use only as directed on the label, and stay hydrated.
Start slowly if you decide to use this. There are many informational sites on the web you can consult for creatine.

The ribose really has no side effects, and it is also a slow working supplement. It may take a week or longer to manifest benefits. I find it very useful myself for weakness and stamina issues. I get my ribose from Puritan's Pride. But iherb.com also has it. I take it at night, as it helps me sleep.

When people engage in vigorous exercise often, sometimes they need some support. There are sites recommending ribose for fibromyalgia patients too.

An interesting study concerning creatine and resistance training for patients who have CMT. Granted it was a small study but at the end it said that creatine was not beneficial. However, I do not think that it would hurt a person with CMT either. I read that on another reputable site.

http://www.ncbi.nlm.nih.gov/pubmed/15221881

I could never tolerate creatine. I tried it when I was working out alot at the gym ..but it always gave me muscle cramping.

But some of our PD posters are finding it helpful for their muscle stiffness etc recently.

The ribose is really nice...however. I'd suggest it for people who have weakness, poor stamina, fatigue, trouble sleeping, etc.
Some papers are suggesting it for fibro pain, which IMO is similar to PN pain. It is a gentle boost without over stimulation or side effects.
It is pleasant to take...just mix in water... mildly sweet. Does not affect blood glucose levels in doses under 10grams. The study I saw didn't go higher however. I don't think massive doses are necessary, anyway.

My doctors have had me on D ribose for quite a while. L carnitine is good for muscle also. I take Carniclear.

This response is directed toward whomever was advised to have a spinal tap after only an MRI and EMG....RUN.... At the very least call your Neurologist.

lamarzz06 - why is this a bad suggestion? i have had 2 mris, an EMG and eye tests? what else would be next?

I wondered this myself. Even my neuologist at Johns Hopkins suggested a spinal tap next IF I wanted one. He admitted it was likely to be unrevealing,and agreed with my decision not to pursue further testing,but it is a pretty standard follow-up to the EMG/NCS, brain scan, blood tests and skin biopsy. In case of a possibly treatable neuropathy, why not?