I am just finding this site. I have had peripheral neuropathy for almost 20 years. I have been on medication on it for the last 10 years. The first 10 years I didn't realize what I had and just dealt with the pain. I was a professional athlete so I had access to pain pills and would take those regularly to get by. But looking back I realize the feelings of walking on glass in the bottoms of my feet every morning were just the beginnings of what I have now.

The cause of my PN has never been determined. I have been through every possible test and seen the best doctors in the world. It is quite frustrating not knowing why something is eating away at your body. I have about 10% feeling left in my feet and my legs are like a jigsaw puzzle as far as feeling is concerned. I have, just in the last 8 months, started to lose the use of both of my ulnar nerves. Meaning that my hands will not be long behind my feet.

I have had tons of medicines. I tried Neurotin and it made me blackout and my whole nervous sytem shut down. I have been on topomax now for 10 years and I swear by that as a nerve pain drug. I also take 400mls of tramadol a day. I take 800mils of alleve a day. I also take 200 mils of Zonisamide every night. I also take 3 advil PM every night to help me sleep.

I have had IVIG treatments, where they supply the body with new antibodies to help fight of new illnesses. This really had no effect.

I have had over 300 sets of blood work done in the last 10 years and never had I had one come back out of the norm on anything. Oh did I mention I am 7'2" and weigh 400 pounds.

Welcome to NeuroTalk, Marty.

I invite you to come to our PN forum:

http://neurotalk.psychcentral.com/forum20.html

We have 6 yrs of information and shared experiences here for
you to learn about.

If you make a post there, please give more details about your medical history. That can help us steer you to a path to perhaps understand better, and possibly arrest or remit some of your symptoms. Some things are permanent, like CMT hereditary issues, but sometimes there are things you can do
to make your discomforts less.

I just wanted to welcome you and I see that Mrs. D has given you the link to our PN forum.

Keep reading the postings. My husband has had Idiopathic PN for 10 years. No pain meds work for him so he doesn't take any.

Does your doctor think it might be related to your height and weight? I mean, is this a possibility? Any family members have PN??

Melody

my doctor doesn't really think it has anything to do with my height or weight. Or any of the tramas I have suffered as a basketball player ...6 knee operations, two ankle operations, degenerative disk disease, arthritis through my entire body, dislocated left shoulder, torn rotator cuff right shoulder. I have also had Bels Palsy on both sides of my face at different times, both with in a years time. I found out of 3% of people that have Bels ever have it on both sides of their face.

As far as family history, I am adopted so that kind of left that out of the mix.

Wow, you sure are an interesting person.
And we do have stuff in common. I have arthritis, (all over my body), they called it degenerative joint disease when I was diagnosed 25 years ago. I weighed over 300 lbs way back in the day. And I got Bells Palsy in 1995. Worst two weeks in my life. I thought I wouid go crazy from the pain. But it resolved in two weeks and all I have left is one eyebrow is higher than the other.

I hope you have some pain free days my friend.

Take care
Melody