[zorro1]

Thanks V5 for a thought provoking thread.
I remeber when I first started the journey 7 years ago and started to really immerse myself in PN forums. I did find after a while that life was going to be pretty grim. Did I need to know that at the time? Actually the answer is no because I did a hell of a lot of worrying basing my future on information that was mostly posted in state of deep desperation.

I remember at one stage I started getting the same symptoms I would read about within a few hours for example someone saying their left elbow was getting numb would trigger mine. I left the forums after one fellow told of his groin going completely numb but of course that had nothing to do with it , it was just my PN progressing naturally.

[Dr. Smith]

Originally Posted by Susanne C.

At the very least sharing with each other here keeps us from boring our families and friends!

.... I think I bore them more talking about some of the things brought up/going on here...

Doc

[Kitt]

Originally Posted by Susanne C.

This is another interesting conversation, and one of my favorite aspects of the forum are discussions like this. I do not think that overall this is a depressing place, or that we present too dire a picture. Neuropathy is so varied in its causes and presentation that forums like this are an invaluable help in figuring out how to mitigate and live with the disease. Doctors, even neurologists, are not interested in the specifics many times, and they certainly do not want to get into lifestyle, nutrition, or supplements which may help.
Those of us who have been on for a while can sometimes recognize when someone comes with symptoms that point to a specific cause, as in hereditary neuropathies. While that is a progressive and untreatable disease it is helpful to know that others are coping with it, in my case with the help of pain medications which preserve a reasonable quality of life.
Even those who come here mostly to relate their symptoms hopefully find that writing about it helps to organize their thoughts and sometimes a knowledgeable member will point out symptoms which may actually indicate a different condition which should be checked out.
At the very least sharing with each other here keeps us from boring our families and friends!

Well said Susanne. And with CMT we are going thru one stage of grief or another all of the time. This is due to the fact that CMT is progressive no matter what we do. And so we are constantly losing something we could do before. You can always tell when someone asks about it be it a family member or not and you tell them only as much as you can see they want to know. When their eyes glaze over, some in short order, you drop it. I never go into any detail unless they ask more questions. Some do and some do not.

I never have trouble with my family members as it is in my family from way back. They have seen their grandmother and me with it. I saw my grandfather with it I was young but I remember. I have researched, learned about it from reputable sources via snail mail to start with and then the Internet with reputable sources. It is not new to me at all nor my family. There are now over 70 kinds of CMT identified so far and there is no end in site. The type of CMT in my family is one of the most common types. If you know CMT, you can spot it in a minute when someone comes walking into a room. Or you see it in their hands or both their hands and feet. CMT is a complicated syndrome for sure. Much research is being done concerning it.