[dahlek]

LizaJane posed a question about Spinal Taps being used for diagnosis of immune type neuropathies...
I replied that that aspect seemed to be the norm, but there's a new article just published that got me to 'google' about biopsies, which are becoming less in favor or use.
Here is one:
http://pediatrics.aappublications.or...ll/116/1/293-c
The middle paragraph is of interest regarding biopsies and which kind.

Here is the 'list' according to Harvard as of 2002....I think it needs updating and is pretty sparse when compared to LizaJane's sheets:
http://www.massgeneral.org/neurology...smallfiber.pdf
In addition, this index and the pics are useful in 'understanding' it all to a degree.
http://www.massgeneral.org/neurology/biopsy/index.htm

This is another article by Fink/Oaklander about the biopsy aspects, tho diagnostic outlines are a bit vague, the pros/cons of QST [which I've not had] are sort of interesting....

I hope these articles are useful to someone, I'm not sure they're in the 'stickies' or not. - j

[LizaJane]

Thanks, Dahlek, the pdf file especially is good, a list of the w/u for small fiber neuropathy.

But I noticed something interesting on the mass general site. They list skin biopsy for sfn as if it's an illness, and don't list "peripheral neuropathy" at all as something they specialize in. It seems there is a great deal of interest these days in small fiber neuropathies, and I'm not exactly sure why, except that there's a new way to measure it.

I'm still in the idiopathic wastebasket, myself, but I do not have a small fiber neuropathy, mine is "length-dependent" which actually hits larger nerves. That's why reflexes are down. Small fiber neuropathy doesn't take out the reflexes until very late.

But it's weird, in the list of neurological illnesses mgh specializes in, peripheral neuropathy is noteworthy by its absence.

[Silverlady]

Dahlek,
I agree, the mass general is ridiculously short. Liza Jane's makes it look like a beginner's list. Maybe someone should give them LJane's list and tell them to update.

Was glad to see the Sjogren's mentioned tho. And thanks for the pictures. It looks like what I imagined.

Billye

[glenntaj]

--and always thought it was just a summary sheet for patients; I can't imagine there isn't some additional material they use internally (that has not been posted) that involves assays for anti-nerve antibodies and the like.

The Cornell-Weill protocol sheets (which I've seen) are much more extensive, and do include assays for anti-nerve antibodies, as well as slots for a number of infectious and toxic causes. (I wonder if I can get one from there and post it here . . .)

[dahlek]

the 'omissions'. From all that I've read, it appears that while Neuropathies are an issue growing by leaps and bounds, it's generally listed as a CONDITION, not an ILLNESS or DISEASE per se. I suspect it's because it occurs as the result of some other disease, such as hereditary,cancer, AIDS, Diabetes, poisons, or whatever. The IDEOPATHIC add-on compounds insult to the nerve injuries [pun accidental] as it's not determined what disease is the actual cause. But then, rarely are hereditary factors tested, nor is testing ever truly comprehensive to more thoroughly assess causes, if any.

Glenn: I'd love to see the Cornell protocols, and, I agree LizaJane's sheets are much more comprehensive than Mass Gen's. While this might be a 'patient' info sheet, there is a lot missing for sure.

It all is a sort of reflected by the treatments and medications used for treatments. Nearly all of them are off-label, and those few that are on-label are approved based on the smallest trials possible. It is even Further reflected in the lack of coordination regarding research, as there is none. While research on the specially bred mouse and rat level is interesting, same with that of such work with snails and other creatures, very little is being done in terms of actual therapies for us who happen to be human. I doubt we will see much improvement in my lifetime! A look at NIH Clinical trials is a wake up call to those with neuropathies....as they are primarily regarding specific, diagnosed primary diseases that 'happen' to have PN as a side effect.

Billye, you are almost forunate in a way, that there is a definitive Sjogren's diagnosis. There are a good variety of actually APPROVED therapies and meds for your defined disease. Your diagnostic protocols are far better defined than 97% of us really. That is, IF you can get a doc to go 'down the list'!

Jane, even I, with a CIDP diagnosis [simply meaning that it's auto-immune and still agressive] am in the 'ideopathic' group. In my case, I can define THREE possibly FOUR specific 'causes', yet not one doc expresses interest in persuing those as potential reasons. I simply accept it, ask occasionally and truly hope that I mite get a doc's curiosity 'button' at just the rite time.

Here's another site addressing the 'laboratory' perspective, again the whole details are vague in many quarters:
http://neuropathology.neoucom.edu/ch...europathy.html

Better days for all - j

[Silverlady]

if you can get one of Cornell's. This forum is being used as an education tool for lots of neuro's who simply didn't get the training they need. I've given the internet address to 5 different neuro's in my own chase for the knowledge and cure. When the neuro's see someone as well known as the Cornell-Weill group, they will pay more attention to it or will be more likely to take it seriously. We just need some way to get Liza Jane's list to be taken seriously by one of the well known big names.

Billye