--got in very late Sunday night (I mut say, driving from Washington to NYC seemed a lot more boring than going down did; was I lacking anticipation by then?), and I have to say that overall, the Summit was a success, if one's expectations weren't too high.

I though Sunday's brunch sessions worked fairly well--it helped that the presenters--Angela Macropoulos, the tax attorney turned journalist who cares for her CIDP mom (who was also there--feisty funny lady despite being basically wheelchair bound), myself, and Lt. Col. (ret.) Eugene Richardson, who leads a number of Florida neuropathy support groups and has been fighting for years to get the armed forces and Veterans Administration to admit that exposure to Agent Orange could have neurotoxic effects (he was exposed in Vietnam), talk and write for a living. We all told our stories, and all of us really pressed home the point that in a world of uncertain insurance reimbursement and harried, sometimes clueless medical professionals, one has to become one's own advocate--the days of trusting that the "doctor will know what to do" are long gone. I was particularly adamant about this--I told my full history, with the acute onset and autodidactic search for info (I think part of the reason they wanted me to be there is to show how diverse the condition is, and it doesn't only strike the elderly, or strike slowly and insidiously); in fact I flatly said "In an Internet age, there are NO EXCUSES to not know about your condition." I had brought 200 copies of my list of essential websites for knowing about neuropathy--which include here (I hoep we get some new members as a result), and a lot of the sites we have listed in the Stickies here, with commentary on which each has and does; a lot of these involve papers written by a number of people who were presenting at the medical side of the conference (i.e., Berger, Treihaft, Brannigan,), and impressed on the audience that these are all names you should know and be familiar with from this field (along with Poncelet, Latov, Dyck, Griffin, Vinik, McArthur, etc.) and that patients should not hesitate to bring in copies of such papers to their physicians. I also praised the "Internet amateurs" who have done tremendous work at compiling databases of papers about various medical subjects--i.e., Jccglutenfree, Rose, Mrs. D, Mary Shomon (several patients at least were familiar with such people, but not all), and a few doctors actually asked me about such people later (though I feel if you were a doctor at the conference, generally you're not internet-dismissive to begin with). (My joke on such people--biggest laugh of the conference, I think-was "I'd canonize these people if I could, but being Jewish I think I have to get a waiver first".)

A lot people--both patient and professional--did speak with me before and afterwards; it was a shame that by Sunday many physicians had left (and the brunch conference only has about 150 people). The patient stories are enraging--the woman who has an acute onset of neuropathic pain rapidly ascending, like mine, who was told by her neurologist that "neurologic pain can't possibly move that quickly"; the woman whose teenage daughter had severe rapidly spreading pain after a lacrosse accident, who nobody thought to investigate RSD/CRPS with; the elderly gentleman who had intractable pain post-stroke that nobody though to mention Central Pain syndrome or spinothalamic tracts to. I spent a lot of time discussing syndrome possibilites and potential tests post-speech (and kept referring people to the Liza Jane spreadsheets). And I did tell the physicians present that I frighten a lot of their colleagues, but physicians should be more open to learning from informed patients.

Still, I'm disquieted about the number of very naive patient questions that I heard over the course of the two days, though the Association people tell me that should be expected. Yes, I expect that on the Association hotline, or its Facebook page, or here from newbies, but not from people who already have enough knowledge that they get to a not-inexpensive conference devoted to a fairly obscure medical entity--not uncommon, to be sure, but not branded well in the public mind. EVERYBODY has an inkling what MS, or Parkinson's, is--you have to do a little work to understand neuropathy, as it just does not get the media attention. And I think that may be the crux of the matter--the condition needs more publicity. There were, to be sure, discussions among us (I spent a lot of time with the Association's Chairman of the Board and his wife and the Executive Director) about whether re-naming the condition might help--should we call it PN, so people then ask "what's that" (a lot of people indicated that saying "I have neuropathy" gets a lot of blank stares, like saying "I have striated adiviporous" or something). I do think the Association is inherently cautious--I suggested, for example, a T-shirt that says "What the Hell is neuropathy?" with a little explanation on the back--but I think that type of in-your-face stuff makes the organization nervous.

There was also some talk about the need for celebrity representation for this condition (no surprise to people who read here, as it has been often discussed) in the manner of Michael J. Fox and Parkinson's, etc. There is a rumor floating around (and I will emphasize that it's a rumor) that Glenn Beck mentioned something about possibly having small-fiber neuropathy on one of his radio shows. As you can imagine, though, reaching out to that type of celebirty produces ambivalence . . .

I suppose the upshot of all this, the proof it was useful, will come from an upsurge in activism. I exhorted everyone there to become loud and active to the best of his/her ability--to always explain the condition to the curious and not so curious, to contact/pester local media to feature the condition, to have their material at the ready, to needle their elected representatives. Many others also emphasized this. Now it is time to get it organized.

Wow, you did a good job! Lots of energy you must have!

Thanks so much for doing this for us.

(and I would shudder at Glen Beck also No wonder he rants so much... sheesh!

Thnaks Glenn

Thanks for your post-conference first post.

Specifically, was there any discussion about possible breakthroughs in treatment and/or current research for small fiber neuropathy?

As I mentioned in my last reply to your on the road to the conference posting, neuropathy symptoms can manifest with lightning speed in a mostly overall distribution. So very happy you mentioned that in your remarks at the conference so that others with that kind of onset aren't dismissed as being non-neuropathic.

Question: The elderly gentleman you met at the conference who has intractable CPS. Is he still in that much pain. One of my neuros insisted that mine was caused by a stroke, but after having much improvement over the past several months, dispute that Dx (made in May). The MRI was completely normal except for some small cysts and because from what I read about CPS at the time of the reiterated stroke Dx (September), CPS gets worse not better.

Sheltiemom

--most of the discussion of pain relief for neuropathy was on the current standard treatments, starting with the anti-convulsants/anti-epileptics and anti-depressants and mentionign opiates for some (I had the attitude during much of it of "this, we already know".)

There was one doctor presenting with some reviews of the vitamin therapy literature, and one European study he highlighted involved benfotamine and alpha lipoic acid used in combination in which self-professed patient relief scores were significantly higher than those reported for either used alone. I was at least glad that there were some people there interested in methods alternative to the pharmacological. In fact, the Sunday session ended with a discussion of the evidence for alternative/complimentary approaches, in which it was highlighted that there is support at this point for the effectiveness of tai chi (for balance and strength issues) and directed meditation (for pain relief).

The post-stroke gentleman I met still has pretty high pain levels several years post stroke, and he's on a lot of Neurontin. I would also think that a true Central Pain etiology would be unlikely to improve--we simply don't (yet) have the ability to regenerate central nervous system tracts to great extent (though there's a lot of genome and stem-cell oriented research in this area to try and help people with spinal cord injuries and the like). So an improvement in symptoms would tend to cast doubt on an original central spinothalamic etiology.

All of the sessions were recorded; I'm going to try and find out if they will eventually be available through the Association, and how and to whom.