On my way to the Neuropathy Summit--
 

By the time most of you read this today, I will be behind the wheel of the 2005 Honda Civic, going from NYC to the Neuropathy Summit in Washington.

Yes, a four-plus hour drive is going to be a push (esepcially given my pudendal area), but I decided against taking Amtrak--getting to Penn Station early on a Saturday would take me an hour in itself, and I want to have the freedom to come and go without relying on mass transit schedules. (Not very green, I know. Plus, the round trip Amtrak tickets are in excess of $200, even with the Summit discount.)

Already peeved a bit--the Association people sent me a powerpoint slide that will be used to introduce me at the session I'm presenting at, and it characterized me as having celiac neuropathy--I had to remind them that in my case the presentation was acute-onset body wide burning, more consonant with an autoimmune molecular mimicry process, and that despite a lot of investigatiin into it, there's been no direct celiac/gluten sensitivity evidence. (And I never told them I had celiac neuropathy, anyway.) So I mocked up my own powerpoint which I'm bringing with me on a portable drive.

I hope to be able to post here a bit on what's going on down there over the course of the weekend, though it may be telegraphic in nature, time being jam packed with presentations and events. (And, I hope there are actually a lot of people there--the rumor was that the pre-event sign-up was not that large, and given the prices and the fact that this is taking place during Chanukah . . .)

I am eager for your updates and reports. Thank you from all of us for attending there. I hope the "peeve factor" does not continue! But given the horrific IOM report that came out this week, demonstrating the reactionary medical thinking processes, I hope you don't run into THAT mentality too!

If you do find similar, that will cause me to ramp up my activity here, that is for sure!

And, oh, can you ask around when you are the relaxed mode amongst the professionals you meet, ask about the new wave of "functional medicine" providers showing up who are RNs or Chiros, and see what the consensus is? I am seeing this a bit here, and on the net, but I cannot find a separate licensing section, in the states' regs that I looked at for this speciality. These typically are not MDs but have a credential from a training school. (there may be some however, with MDs now, but not sure)

Will certainly be anxiously awaiting your reports whenever you can get to them. Especially interested in learning what they say about your case as mine began just like yours - sudden onset overall body burning.

Hope you have a good and safe trip to and from. Thank you so much for atttending, given the price.

Sheltiemom

P.S. And so what if your transportation choice isn't "green." It's what works for you under the circumstances.

Im glad you are going. They will learn as much (well really more) from you as you will from them. Relax a little too during the getaway.

Have fun. Keep us posted.

Well--it is late on Saturday--
 

--and I'm on a crappy wi-fi connection (high speed indeed) in the Hilton Lobby, but figured I'd throw out a few thoughts since I got here around 2PM.

I did manage to attend a few of the aftenoon breakout sessions on various types and issues in neuropathy. Not much happening in them--the ones on types of neuropathy (i.e., autoimmune, toxic) were led by physicians, and there really wasn't much of interest presented--in fact, most everything that was said/discussed is available right here, and/or on other sites listed in the "stickies". Of course, I did not get to see the physicians' presentations for other physicians, most of which took place Friday, but perusing some of the handouts from these was not particularly enlightening, except for some small treatment comparison studies on how benfontamine and alpha lipoic taken together orally was more effective at symptom reduction than taking either seperately (even that seem no big deal).

One thing that did annoy me a bit was a plenary led by Dr. Alan Berger from Jacksonville Shands on idiopathic neuorpathies. Dr. Berger did not come across with many specifics here, but certain opnions expressed I did question, such as his assertion that facial parastheses are unlikely to have a neuropathic cause--I did point out that facial symptoms are not uncommon in situations such as Sjogren's and celiac neuropathies. He also pressed on not taking too much B6--I felt compelled to clarify the anecdotal nature of a lot of the reports of B6 hypervitaminosis and that none of these have seemed to occur in those taking the P-5-P form--the fact that he was not familiar with that form was a bit off-putting (especially since the Metanx people were exhibiting in the vendors' hall).

But, my biggest peeve was the nature of the questions from the idiopathic patient audience. I had assumed that people coming to this Summit, and paying for it, would be committed to knowledge and self-empowerment, and would likely be relatively knowledgable about the condition, but the nature of questions and comments to a great extent belied this--a lot of them didn't even get to the level of Neuropathy 101 (i.e.--"What is an axon? They say I have axonal neuropathy. . ." "Can alcoholism cause neuropathy?" "Is Lyrica a good drug for neuropahy" and the like). Apparently, many of these people don't read here--or anywhere else. I found it hard to believe in an Internet era--and this was not a group of technophobes, lots of laptops and cellphones--that people were so UNDERinformed, not necessarily mis-informed. It made me even more determined to preach the self-empowerment mantra at my seminar tomorrow--a large number of patients are going to get a lecture on not taking charge of learning about the condition--a polite lecture, but it's going to be a lecture.

More on this tomorrow (when maybe I'll alo get to talk informally with the medical people who still remain).

Thank you Glenn for filling us in and for being our advocate. I hope all goes well for you tomorrow.

Oh, my.

I am not a bit surprised that P5P is not understood.

I have direct experience with doctors, who to this day do not really know what an NSAID is...or how it works!

When you see proof that doctors ignore FDA warning letters, about post marketing toxicities and continue with dangerous stupid treatments in the face of EVIDENCE to the contrary... not knowing what P5P is, is chump change. Examples are Hismanal,
Duract, Seldane, and Propulsid! (all these drugs worked exceptionally well, but had to be used carefully and only under physician monitored situations!) All had to be removed from sale in US to keep doctors from killing people, literally.

The medical conference I attend, for Chronic tertiary neurological pain, which focuses on Headache, but also includes RSD and Fibro, allows the audience to be mixed, but limits it to licensed professionals. So there are nurses, and pharmacists there as well as doctors. It tends to focus on etiology, identification/diagnosis with only some mention of treatments. It is an all day 10 hr, rather exhausting day and very expensive, but very very good. It is attached to University of Michigan as well. I'll be attending again this May. (my 3rd).

They tend to sequester physicians discussions at these things. The PD forum had a hoohaa about a PD conference not too long ago about this.
Having patients listen to how doctors think about them and treat them can be disconcerting. They label people as drug seekers, borderline hysterics, hypochondriacs, etc and laugh about it. The psychological issues, can be off putting. One psychiatrist I saw at a conference called the interview with a patient, who "needs" Prozac, an "organ recital" ... meaning if a patient relates a list of pain and discomfort ..that means they need Prozac, and sure, give it them, and here is how....yada yada. So even describing your pain --which seems to me necessary to a doctor after all--- can be viewed with disdain by them! In some ways, the attitude of House (on TV), which is exaggerated to some extent is really true.

So far your attendance is reaping useful stuff. And it appears to be what I suspected, too.;)

And yes, I agree, that patients still tend to avoid self empowerment.
And that is a shame, given all the free resources that are out there now with the internet.

Mrs D,

can you please tell me which IOM report you were referring to in your earlier post.

Sure, the IOM issued a highly disappointing (some think cowardly) opinion this week
about the new Vitamin D research...it is all over the net.

Here is our thread on it...

The new stuff is at the end part of that thread:
http://neurotalk.psychcentral.com/thread92116.html

Also on PD there are discussions about it:
http://neurotalk.psychcentral.com/thread139771.html

D-Action has a Facebook:
http://www.facebook.com/profile.php?...n/198626816074

Well. I am back--
 

--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. :D

(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

Unfortunately--
 

--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.