Welcome to the forum Nancy.

I have had neuropathy for at least 10 years, if not longer. My first real diagnosis that I remember, was carpal tunnel at least 10 years ago. I do remember complaining about this ache and that ache, and being told I was too young for so many aches and pains. It is all gluten related for me, at least we think it was the monster that caused all this toruble.

I have gluten ataxia, sensory neuropathy, axonal neuropathy, arthritis, and good old sleep apnea. We will never know where my B12 level was way back then, no one ever tested me for the level. Five years ago, I started taking B12, and will always take it. There finally has been minimal improvement, which is all good. I take 5000mcg daily of Jarrow Methylcobalamin Sublingual B12, and my neuro told me to continue with this dose. My last level came back at 1016. I'm thinking it must have started out pretty low.

Over 13 years.
My pain has been up in the 8 range much of that time.
Now my pain is about a 4 or 5.
Take 150x2 of Lyrica occasionally Tramadol and Lidoderm Patch.
My b12 is 396
I walk or run 3 times a week and I run 4.2 miles Saturday! Milestone for me! I hike once a week in the summer.
I eat healthy and I've been on supplements (again) now for 2 months and they are helping. I need to stick to it relentlessly!!!!!
My goal is to get off all rx meds!

all of my blood tests, which were extensive, i felt a few times like i had been bled out, and for that matter all of my tests except for emg/ncs have come back negative. I havent been walking except for run of the mill walking in a store, around the house etc because it has become much too painful to do. My walking has become much worse.

Hope I noticed that this thread was started back in Feb 2009, and I am guessing that the test did say you have PN because of some of your relies. Did you find out if it was motor, senor, and auto or more than one? Maybe you wrote it down before and I just missing it.

How long ago did PN started, I don't know. I think I had it for a long while but could not figure out what was causing the pain in my feet and ankles at that time. I went to a foot doctor because it got worse and she insisted in farther testing because she believe something else was going on. She wrote out a script for a EMG/NCV Test. It show that I have polyneuropathy (senisor motor) thing going on. This test was taken not to long ago.

How are you doing Hope? Are you able to find something to give you some relief?

Hi Trishann. I went back and read my original post here back when I was four months into my PN. It is now about ten months later. All of the tests including an EMG that I took back then came out normal, so I am still ideopathic. I was never really given any kind of diagnosis. Not too long after that I lost my health insurance for awhile and even though I got it back, it has been quite awhile since I have gone to the doctor. As far as my PN is concerned, I have had some changes. In June I took myself off the gabapentin as it wasn't working for me. My PN has gone from constant pain around a 7, 8 and even 9 to a current lower level of maybe 2 or 3. I used to have body wide pain at all times and now the pain is mostly centered in my legs, especially my left leg. My entire back, stomach and knee caps used to burn on fire, now instead I am experiencing more bits and pieces of pain in those areas during and flare up.

The flare ups come and go and seem to come on mostly at night when I am in bed. I know my hormones flare it up otherwise I can no longer pin point it to any one thing. Things seemed to have changed a bit, but with PN you can find yourself getting better or going right back to your worse period. I just don't take anything for granted and try and get through each day at a time.

Thank you for asking Trish. I hope you too are able to find something that works in giving you relief. Please keep us posted...

Hope I am so glad that you got your insurance back. Hope you see a doctor soon and maybe get something that can help. And you are so right, nights
are really bad.

Most of the time I will sleep with my MP3 player on just so I can get my mind off the pain, it helps some; and I sleep with a heating pad, but it has a saftey that turns off. I also had this special made pillow that you put between you leg, it just a foam cushion, which it helps sometimes.

I couldn't take gabepentin either, but Lycria doesn't give me the bad side effects and also gabepentin did not do nothing for me, but it does wonders for other. You have to just keep trying until you find something that works for you. Even though it doesn't take all the pain away, at least once in awhile you get some relief.

Trish