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:
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