Demographics questions -- and more
 

Whenever I have to explain to someone my disease and how it affects me, I find that few people are familiar with it. I know I was unfamiliar with it until I finally self-diagnosed (but it took months for my primary provider to agree).

There are no telethons for us like there is for Jerry's kids. As far as I know, there is no fancy and well-heeled foundation funding research and lobbying Congress.

Where does one go to find statistics about this disease? Numbers of us. Age, gender and nationality?

I don't want to come across as a victim in this, but it would be nice to know how many of us (as a percentage of the population) there are.

Does anyone have leads for where to find such information?

CB

Don't we wish that neuropathy had a much higher profile with a telethon of its own.

The problem is that we can't go on these "walks for (fill in the blank)" that we see happening with other diseases, because many of us can't.

Sanjay Gupta, M. D., who's on national TV (if he still does this) is a neurologist. Maybe he'd do a piece about neuropathy. And then there's Dr. Oz. If they could be persuaded ................

It would be interesting to know how many people world-wide (a ballpark figure)
have neuropathy in one form or another and, I would add, who are not necessarily diabetic. There are so many of us who aren't. But have no idea how to start accumulating the data.

Sheltiemom

the number one cause of peripheral neuropathy worldwide is leprosy. Diabetes is only the major cause in the developed world.

Since many drugs are the cause of PN, I think most doctors are reluctant to address this fact, probably because their pharmacy reps tell them it just isn't true. I think Dr. Oz would really bring a lot of attention to our disease though if he were to discuss it on his show.

I have yet to read anything in the Peripheral Neuropathy newsletter that said anything about drugs being the cause. Joan

Joano, I agree that drugs are a MAJOR cause of PN. I am not sure what it will take for this to be researched better. The other issue is that people don't know that PN is coming on....it isn't like there is one symptom, there can be many, and it can be insidious.

PN is a symptom of many diseases, and yet a disease unto itself....this may be the reason no one has latched onto it. Yep, it would be nice to go on a 'Stop Neuropathy Walk'....I would say run, but, nowadays....running it out of the question.

Was anybody on a statin? I was on three different ones for 12 years - Zocor, Lipitor and Zetia.

My rheumatologist pulled me off Zocor immediately back in February. He said that statins do - not can - cause neuropathy. Have wondered ever since if this was the cause of my small fiber sensory neuropathy but don't know if there's any way to find out.

I continue to wonder if my "idiopathic" sensory neuropathy was related to Paxil. The drug company lists paresthesia as both a side effect of the drug itself and its withdrawal. I've also seen others describing symptoms consistent with neuropathy posting on Paxil discussion forums. I'll never know for sure. I only hope that if it was related to Paxil, I might eventually have some nerve regeneration

There is, actually, a neuropathy walk--
 

--in NYC each year, through the Neuropathy Association, and Cornell-Weill's people are associated with it.

But you are all right, the condition does not have anywhere near as high a profile as many other neurological conditions that affect fewer people.

It is estimated that in the US, there may be 10 million neuropathy sufferers. That's far more than suffer from MS, Myasthenia Gravis, and Parkinson's combined.

I've written about this problem many times, speculating whether the problem is lack of a high profile celebrity talking about neuropathy--Parkinson's has Michael J. Fox, for example--even though people as diverse as Mary Tyler Moore, Bobby Short, Johnny Cash, and Andy Griffith have suffered from one form of neuropathy or another, or because neuropathy is often considered a secondary condition to some primary one (Ms. Moore's is due to diabetes and she campaigns for that, for example.)

I don't think our national/international organizations do enough to raise the profile of the condition, and have written about that, too.

And, the fact that many cases may be drug- or environmentally-induced does produce some degree of reticence among the establishment powers whose bottom lines may be at risk.

Here's two older threads that talk a lot about this--very insightful:

http://neurotalk.psychcentral.com/sh...riffith&page=3

http://neurotalk.psychcentral.com/sh...=Andy+Griffith

My hubby is on a statin and his legs got skinny and he has lost the hair on his legs....I think he has neuropathy now. He has way more complaints than he used to. Thing is...he won't lose the weight to get off of it.

Statins can --
 

cause peripheral neuropathy. Unexplained muscle pain and weakness are very possible. I know a few people in the general population who have this. CMTers should not take statins. That's all we need is more weakness and muscle pain.