kitt - you said yourself : "When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal, but the strength of the signal is reduced"

both were normal for me....also what about my other symptoms and heat sensitivity (or maybe stress - could heat or stress bring on symptoms of CMT?)

I only put information from reputable sources. It is not my personal thoughts. This is if I am reading your post correctly.

When Suzanne C. mentions Hereditary Neuropathy with liability to Pressure Palsies (HNPP) it is the opposite of CMT1A. With HNPP you have a deletion and with CMT1A there is a duplication. If interested you can review the site.

http://www.hnpp.org/

In my case I could do anything and everything until symptoms appeared in my early 50's. At that time I still was doing many many things but as CMT progressed that changed.

DNA blood testing might be in order. Here is a site where you can get information on it.

http://www.athenadiagnostics.com/content/index.jsp

You can also telephone them.

And as Suzanne C. said we are not saying that you have it in your family but there certainly is a possibility. Can your mother run, does she trip over every little thing, are there other symptoms which she may have.

http://www.healthline.com/galeconten...hic-neuropathy

You have probably seen this site.

Also, if you overdo anything especially exercise, you can exacerbate symptoms of CMT. I have not heard that height has anything at all to do with it. I know a number of people with CMT who are not tall at all including myself.

my mom does not have any symptoms as far as i can tell (but my grandma did not begin having symptoms until she was in her 50s). could the symptoms really show so late in her and so early in me and be the same thing?

Kitt, I do not think that height has anything to do with hereditary neuropathies, but studies have shown that it is a factor in other length dependent neuropathies, including diabetic neuropathy, so I was just curious. I should have been clearer. I think our symptoms may be worse because of abnormally long arms and legs and the length the weakened signals have to travel, but that is just speculation. My neurologist and podiatrist both mentioned it, and my other son was tested for Marfan's syndome because we are such anatomical freaks, and he has cardio pulmonary issues due to a caved in ribcage, 5+ on the Haler index.

Yes, Boiler, age of onset and severity of symptoms can vary wildly even within families. As I said I only recently needed canes and am considering bracing, but my sister had braces since early childhood. It can absolutely be the same thing and as Kitt said, your exercise regime may have aggravated it. Please realize that we are patients, not doctors, and we are not diagnosing you, just trying to help you categorize your symptoms and options.
I think the coldness may be highly significant. Is it accompanied by increased pain and do you have great difficulty getting warm?

hmm i dont think i have ever had increased pain when cold and when i get cold it can be like 70s outside i will wear like fleeces and still be cold sometimes. i know that u r not doctors but i appreciate your help any way. i looked at the athenas website...is there a way to narrow down which genes to look at (there are like 15)? also does insurance cover these tests typically? and how much do the tests cost? thank you

It really depends on what type of insurance you have. Ours is excellent, and would have covered all the tests, but we have switched to a high deductible HSA plan which covers everything after a certain point. Most years I would have no trouble meeting the $3000, with the gabapentin running close to $2000 alone, but it starts with the fiscal year in April, so this is only a 9 month year. Next year I will most likely have another spinal MRI and the type 2 tests.

Are you able to warm up on your own? Usually with CMT you need an external heat source- a hot shower or bath, electric blanket or heater to warm up. I admit to using my hair dryer a lot. The back of my thighs are particularly hard to warm up.

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.

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.