Hi Abby ~ Gosh, I've never even HEARD of it, much less known anyone with it. i have peripheral neuropathy of the legs/feet, and I hate it, but I think I'd hate YOURS much more!!! Bless your heart, that must be MISERABLE!! i'm wondering if perhaps an anticonvulsant would work for you too, like they have us on -- something like Topamax or Neurontin. These meds are anti-seizure meds but are also used for nerve pain. You might ask your doctor about them. I prefer Topamax as I feel it works better than Neurontin -- plus you don't gain weight on it. Most people even LOSE weight.

Anyway ~ you must be a rare breed!! I've never heard of this condition and I hope you find something that helps SOON. God bless and take care. Hugs, Lee

Thank you Leesa. I'm at the very beginning of my journey through this, even though I've had the issue for 5 years. Just having a name for my symptoms is helpful. Reading through these boards is also helpful, because while my pain isn't in the same places as the majority with PN, it seems the fatigue, and level of pain is the same, and just reading about others is helpful.
I'm in sponge mode, and am soaking up all the info I can get my hands on.

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 number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Jump on down to the 'peripheral neuropathy' site?
http://neurotalk.psychcentral.com/forum20.html Click onto this blue and it'll take you rite there..
There has been posting intermittently now? A member called KMEB if you do a 'member's list' search...you can find all her posts ... She's got it bad.
Hopefully you got your problem caught in time and before other things complicated this neuropathy!
Other neuropathies can be caused by gluten and some inherited issues...so check these sources out, please. The 'stickies' [sources of good stuff that should 'stick around'?] are chock full of mind expanding or warping or dulling aspects of neuropathy diagnosis and then treatments. After a while? All the 'tech' words will just roll off your tongue! Why? Because you needed to have learned them, and often must use them w/docs!
Good luck reading stuff...do it in 'bit's please? Otherwise your mind might melt! Info Overload is not fun to have! Hugs and hope and soon! 's!!!!! - j