[Quilter]

Quick Hello to all. I have struggled with neurological problems for almost 5 years. Today at OHSU I met a wonderful doctor. I was told I have signs of small fiber neuropathy and large fiber neuropathy. I am scheduled for two types of EEg'? a million labs done today. I am scared b/c I looked on the web and it said that Large fiber neuropathy can lead to sudden death. I have a 9 year old. I have struggled for years, not knowing what is wrong, and to suddenly see I now am in a catagory that is 50% death rate within 3 years of diagnosis. I'm quite tearful.

I'm hoping someone will tell me that internet stuff was a bunch of bologna.

Worried in Oregon

[mrsD]

Welcome to NeuroTalk.

There are many things that can be tried for neuropathies.

First off... did you have a serum B12 drawn? Low B12 is the most common cause. Lab ranges in US are old, and outdated, and some people are given "normal" results by doctors when in fact they are low. Anything below 400 is suspect.

This can be fixed easily and inexpensively.

I hope you will visit our PN forum:
http://neurotalk.psychcentral.com/forum20.html
There is also a SubForum there at the top of the page, with information.

I found a link on the web to a Medscape article:
http://www.medscape.com/viewarticle/426917

While it does have that quote in it... it also has other information as well:

Patients with autonomic neuropathy have an increased mortality rate; that rate can be as high as 50% within 3 years of diagnosis......If diagnosed early, neuropathy may be reversible, or as least controllable. There are 3 proposed stages of neuropathy:

You can read the full article from the link. If they ask you to join, it is free, no strings attached. I suggest you do so...since Medscape is a good resource in general.

Neuropathies can be improved in some cases with supplements, and dietary changes. Many things are possible, but you do have to do some homework, and be willing to be your own advocate. There are no drugs to cure neuropathies, but you can remove triggers or toxins, and change diet, and take some nutrients to enhance healing. IVIG is the only exception today, and is reserved for certain forms of autoimmune neuropathies.
All of the other drugs offered are symptomatic and do not change the course of the damage.

Common causes include some common drugs we get exposed to.
The subforum has a thread about drug induced neuropathies.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great and caring fellow members here to assist you. Our shouders are here for support in many ways. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene