[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).