Then there is the other side of the coin. If a person does not have any symptoms of CMT and they get tested and find out that they indeed do carry it then they might have big time trouble getting insurance. If they go to work for a large company, they would automatically be covered by insurance. However, with a smaller company or with an individual insurance policy, they will likely be unable to get insurance. I had that happen. Or there might be a rider put on for CMT. Well, that doesn't help either. And this can happen whether a person has arthritis or any other number of diseases. I've seen that happen too.

Personally, I would never get tested as you do pretty much know that you have it if it's in the family history and symptoms come along. You can then deal with the symptoms as needed.

Yes, nowadays we have the list of drugs that could be problematic. Some are really bad. But in other times there was no such list. That isn't good either.

There is just such a fine line as to what to do. It is up to the person to decide after getting informed on the whole concept of CMT. And CMT is not well understood except by experts who know CMT. Many, many other doctors have heard maybe 10 minutes on it and they do not understand it anyway and they always say that they probably will never see another person who has CMT. And they are probably right. Or - they could be wrong and have already seen someone with it but did not recognize it.

CMT is also misdiagnosed as many other diseases. So it can be a mess when it comes to finding out about it. I am certainly no expert on it although I've seen it first hand when I was five years old. I didn't have symptoms then. Not until my early 50's. I've seen it way back in the generations after doing research. That is for the type that I have.