[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

[glenntaj]

--who originally came to forums such as these looking for information/answers regarding an unusual presentation of neurological symptoms (acute onset full body burning neuropathy), who did get some info that was useful, but appreciated the support and commiseration even more, who became a severe autodidact regarding neuropathy and so became able to share and "pay it forward", and who did get considerably better (acute onset neuropathies have more potential to lead to at least some recovery--but, of course, I have all sorts of other interesting medical issues, such as hyperparathyroidism and pudendal issues, which may or may not be related, and which are useful to me to discuss with others too). I stayed here and come on to the boards every morning, though, because I felt the responsibility to share the knowledge I gained with people who came here searching, who were in earlier stages of the condition, or who were just not well versed in neuropathy.

The latter situation is very common; though neuropathy sufferers outnumber multiple sclerosis, Parkinson's, ALS, and epilepsy sufferers combined by a considerable margin--it is estimated that one in 20 people may suffer from it in their lifetimes--neuropathy is the "neurological condition nobody knows". Partly this if due to the fact that neuropathy is often treated as a syndrome that is caused by and secondary to something else--diabetes, toxicity (chemotherapeutic or environmental), nutritional, autoimmune, etc.--but part of this is due to the lack of publicity, both in the medical community and in the general media, about this "less than sexy" condition. And, as I have ranted about here quite often, we don't seem to have famous celebrities with this condition bringing knowledge of it into the mainstream discussion, as Michael J. Fox has done for Parkinson's. It's not that there aren't celebrities with neuropathy--Mary Tyler Moore, Glenn Beck, Andy Griffith, Johnny Cash, Bobby Short, Dolores Hart, etc.--but it seems these people don't go out of their way to shine a spotlight on it. I once made a joke that given the averages ages of members of Congress, I suspected there was a lot of neuropathy there, but I doubt anyone has heard representatives pushing for more research into it the way they often push for funds for research into PTSD, MS, and the like.

The Internet has helped, of course--we now have information at our fingertips that thirty years ago we would have had to go to a medical library to access, if we even could access it--but forums such as this are very valuable for both support AND information dissemination, as I find the newer social media outlets such as Facebook deficient in their abilities to present and evaluate complex information about conditions, despite the number of people present on them. Forums such as this fulfill that function much better, in my opinion. The trick is to get people to find us and to contribute with more than 140 characters (you can often tell the initial posters here who think this is like Twitter or Instagram and leave very short, cryptic and hard to interpret communications).

[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.

[v5118lKftfk]

Thanks for everyone's replies.

I was a little nervous posting this topic in fear that in print it would come across as criticizing this forum or forums in general.

In fact, I am incredibly grateful for this forum and have a long list of reasons why I think it is wonderful.

I just thought it might be useful to ask ourselves questions like this occasionally.

Thanks again,

Natalie

[Stacy2012]

Pretty much agree with what everyone has said.

I came looking for info and help. I stay because I still find help here, even if it is just reading old posts. I stay because the support is amazing, it is nice to have others who actually understand what I am going through to share with, even if its a cyber hug. I feel I can say more here than in my real life, as people here understand. I stay to help others in any way that I can, even if its just a cyber hug, or a story that may relate to help them, or quite simply to know who else to pray for. I stay because I have learned empathy for all who live with daily pain and to remind myself it is not just about me. I stay because it has become my PN home.