among the unimpressed. I thought the newsletter was worse than useless. And so are the boards.

I feel sorry, in fact, for those with initial onset who visit there instead of here. I wandered in once and found a guy who had sensory Guillain-Barre. The other posters had him convinced his problem was permanent, because they had never heard of any kind of PN getting better. I set him straight, and he was one of the lucky ones. He recovered quickly and fully.

So, I can give specific examples of harm I've seen. The good? Not so much.

Not only is it sad...It's frightening!

I've got that Tee-Shirt....It's got holes in it and should be a rag...I AM STILL WEARING IT.


Shouldn't have to be so! -

All good things and at least ONE pain-free moment for all each day! - j

BTW - I don't recall, not being a member ever seeing a newsletter to see the 'stuff they are made of'...I for one, do NOT live under a rock!

being 'blessed' with this in my mid-50's!

Needless to say, expectations of 'retirement' and all that could be done have diminished to 'at this HOTEL,...how far do I have to walk to do A, B &C?'

This is NOT what I nor anyone could have anticipated and it AIN't RETIREMENT! - j

In addition, recently I saw that they were still making blanket statements that neuropathy can't be cured. Some can't, and some can. And I gave up on the BB years ago.

It appears that too often information is lifted indiscriminately from articles that are misleading or wrong. The "elderly" comment reminds me of the editor I contacted regarding their implication that only elderly people need worry about malabsorbing B12. In his backpeddling effort to cover his **s, he referred to people over 50 as elderly.

There's nothing wrong with being "elderly," guess I'm getting close now, but it's a terrible shame the number of young and middle-aged people who are suffering or being disabled unnecessarily because of this sloppy writing.

rose

My understanding is that Dr Latov, who started this organization, is very concerned that there has not been much funding for research on neuropathy. But that his concern is actually narrow--he's interested in research on IVIG. His work is all about IVIG, and I would suspect that the pharma donations to the Neuropathy Association are IVIG manufacturers.

I'm not convinced that the association was developed for any reason other than to raise money to support IVIG research, which, in turn, could lead to easier approval of the treatment by insurance carriers.

This is not a bad thing at all. I believe that IVIG should be more widely used than it is, if only as a trial for those with nothing else to turn to. But I don't think the Neuropathy Association can be expected to go beyond this.

The thing is, neuropathy is really not an illness. It's a simple description of one symptom. It's nerve death, and it's nerve death that could be due to a huge number of things. So raising money for neuropathy, as a general thing, is not going to happen on a large scale. Money for diabetic neuropathy, HIV neuropathy, autoimmune neuropathy, etc--that's where the money is. Idiopathic? I don't think there's a huge groundswell of interest in this. It's not a specific enough target for anyone to invest in.

Consider the Neuropathy Association a lobbying group. We need a lobby. But perhaps we need to know what to lobby for beyond IVIG research.

Glenn, Bob and Kmeb: What bothers me more is that they are listed as THE only resource for PN'ers. THAT AIN'T TRUE!
As for that organization being the 'Advocate for IVIG', praytell WHY don't they have CURRENT INFO on the issue?

BTW I just checked and it seems that posts of critical content have been deleted? Don't like it, IGNORE IT?
I would join in a flash IF I felt that I was contributing to something viable, something vibrant and something with VISION. In all honesty, I find it a site perpetuating a 'vacuum of information'.
Sad state of affairs, overall - in my book. - j