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-   -   STICKY - Important Links to Useful websites (https://www.neurotalk.org/peripheral-neuropathy/177-sticky-links-useful-websites.html)

LizaJane 08-26-2006 03:33 PM

STICKY - Important Links to Useful websites
 
Here's the website for the spreadsheets and charts. These are to keep track of tests, as well as to help direct tests for diagnostic purposes.

I suggest folk always ask doctors for copies of labs, xrays, and other studies, before leaving the office. Never leave without them. Then put them on the charts, and you will be able to carry them to other docs, and be able to see trends. Trends are usually missed by our doctors, who have pages of separate labs.

Good luck with them!

Also, there's a sheet for keeping track of medical expenses, and one for medications.

www.lizajane.org

dahlek 08-26-2006 09:49 PM

You are soo right...
 
besides, if you include a no-other terms accepted letter to the doc you're seeing when you first see them, I can bet you'll get THE letter addressed to YOU w/cc's to all the other docs. Sometimes it can really work. Staff gets soo flustered that you are DEMANDING at the start, they just do it and forget to charge...works for me on occasion.

Loved your comments in forums BTW - go get them lady Tiger! - j

Bobbi 08-27-2006 04:50 PM

Guide To Peripheral Neuropathy
http://arthritis.about.com/od/nervep...pathyguide.htm

Mayo Clinic - Peripheral neuropathy
http://www.mayoclinic.com/health/per...opathy/DS00131

MedlinePlus Medical Encyclopedia: Peripheral neuropathy
http://www.nlm.nih.gov/medlineplus/e...cle/000593.htm

Peripheral Neuropathy Fact Sheet
http://www.ninds.nih.gov/disorders/p...neuropathy.htm

Peripheral Neuropathy and Neuropathic Pain: The Facts
http://www.neurocentre.com/

Peripheral Neuropathy - a patient's guide
Dr. Geoff Green - Physician
http://www.medic8.com/healthguide/ar...europathy.html

Peripheral Neuropathy
Explanation regarding this problem with the functioning of the nerves
http://www.medicinenet.com/periphera...hy/article.htm

The Neuroopathy Association: Peripheral Neuropathy Support & Research
http://www.neuropathy.org

Why Does Peripheral Neuropathy Cause Pain?
Steven Scherer, M.D., Ph.D.
http://www.charcot-marie-tooth.org/about_cmt/pain.php

Understanding Peripheral Neuropathy - the Basics
http://www.webmd.com/content/article/7/1680_53887.htm

dahlek 08-28-2006 10:42 AM

Bobbi, LizaJane: thanks for getting...
 
things rolling. I stillhave to dig thru my unfortunate 'info' piles. I'm hopeing to save the more esoteric.

But, Has anyone, please saved that deramatology/skin/nerve/vascular/lymph whatever site for reference - I can't find in my vast memory bank, always 'assumed' BT 's here, no-problem.... Helllup? - j

glenntaj 08-28-2006 11:01 AM

Sorry, I don't have that one--
 
but here's a good list from my databases, all of which were in one "sticky" or another on Braintalk (1):



The Neuropathy Association:

www.neuropathy.org

TNA has an index of types of neuropathy. At the site click on one of the categories, such as "Immune Neuropathies", and you get a pdf document including epidemiology, symptoms, risk factors, laboratory signs, prognosis . . .very good starting point for understanding various neuropathies.

http://www.neuro.wustl.edu/neuromuscular/naltbrain.html

This is the diagnostics entry point for the huge neuromuscular conditions database at Washington University of St. Louis' medical website. It is written primarily in outline form, and mostly for medical professionals, but it is extraordinarily comprehensive; going through the links and sub links reveals a wealth of info on neuropathy (and other neuromuscular conditions).

http://www.aafp.org/afp/980215ap/poncelet.html

The famous Poncelet protocols. Outside of neurology textbooks, this article has become the "gold-standard" guidleine for many physicians and neuros for investigating the causes of potential neuropathies. The flow charts are particularly instructive (and good to show ingorant physicians).

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

One of the best articles I know written about small-fiber neuropathies, which can be difficult to diagnose, as "standard" test for neuropathy often come up "normal" and fail to reveal them (and meanwhile patients suffer). The reference list is excellent--it includes many of the seminal papers on skin biopsy, autonomic testing, and small-fiber vasculitis and other causes of small-fiber dysfunction (these can themselves be investigated if one wants).

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

A small but dense clinical application paper about laboratory tests to investigate causes of peripheral neuropathy. Dr. Latov heads the Cornell Weill Center for Peripheral Neuropathy in New York City, and he and his staff may be the world's leading experts on immune-mediated neuropathies (not that they're slouches in other realms, either). (All docs there are both researchers and clinicians--and, I can tell you from personal experience, and informed patient can have great discussions with them.)

http://www.dcmsonline.org/jax-medici...uropathies.htm

Another good paper--this one form Dr. Alan Berger and his colleagues at Jacksonville Shands. It provides a good overview of diagnosis and treatment options for various kinds of neuropathies, and suggests a particular categorizing method to understand them.

http://care.diabetesjournals.org/cgi...full/26/5/1553

If you ever wanted to understand diabetic autonomic neuropathy, this article's for you. In fact, Dr. Aaron Vinik is probably the world's leading expert on diabetic neuropathy of all kinds, and googling his name can keep you busy for months. (This article has a reference list one could choke on, but it contains almost every important paper on diabetic neuropathy written in the last 30 years.)

http://www.diabetesforum.net/cgi-bin...content_id=341

An excellent and comprehensive overview of diabetic neuropathy from an unlikely source--Gopi Memorial Hosptial in India.

[url]http://www.neuropathymd.org/topical/18/Neuropathy%20and%20Monoclonal%20Gammopathy.pdf#sea rch='Latov%20Monoclonal'[url]

Another Latov article on an often overlooked generator of neuropathy--para or M-proteins in the blood, sometimes related to blood dyscrasias.

Liza Jane's spreadsheets have already been posted above--and I highly encourage their use.

And--for those who like to look up many conditions in one place, I highly recommend the Emedicine series of articles; just go to emedicine.com. You have to sign up as a user, but then you can peruse the database. The material is dense--written for medical personnel, again--but highly comprehensive.

So hopefully this will be a good start, and others should feel free to add to it--either general articles or those on more specific conditions.

annie 08-28-2006 03:38 PM

i posted on forum feedback last night asking someone to sticky up in the epilepsy forum an excellent thread with information for new posters. we always had it as a sticky before.

this morning i went to epilepsy and there it was, all sticky. so someone should ask to have this thread stickied also, it certainly has excellent information.

LizaJane 08-30-2006 02:36 AM

folks who did older stickies
 
Is there anyway to get a link to Rose's B12 file here, or JCC's gluten file. Or Wings' road to health file?

Perhaps people have them on a word document and can get to them?

What people can do to have them online in a way that can always be reached...go to www.lizajane.org. You'll see a link that let's you upload anything you want to upload. You can upload the document with all the information. Then people can still reach it through lizajane, even when BT is down, and your own computer has crashed. It won't get lost again...

Silverlady 08-30-2006 09:24 PM

Rose's B12 Website
 
Yep that's right. After a nudge from me today, Rose is starting her own website about B12 deficiency. It is new and she said to apologize but it's the first webpage she's done. But it looks like it will be good. Keep checking back to it, it's gonna grow now that she has started. I am so appreciative of it.

http://roseannster.googlepages.com/home

Billye

glenntaj 08-31-2006 05:54 AM

I'm sending Rose a big thank you--
 
--as once that page is finished, it will literally be a life-saver, and hopefully not subject to being "lost", as is the huge compliation of info she has at Braintalk 1. I'm not entirely sure, but I believe her initial B12 thread there went on for something like 660 posts or so. A very important document, and while hopefully it will become accessible again, it's important there will be a seperate place to access the info (like it is with JCC's Gluten File).

Silverlady 09-01-2006 09:27 PM

The Gluten File
 
O.K. I remembered this file from the other neuropathy website. It's Jcc (Cara's) website about gluten sensitivity and the huge file of info she has on it.
http://jccglutenfree.googlepages.com/

Billye


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