After reading some of these posts, I feel rather underqualified to be on this forum.

--that the Liza Jane website seems to be having problems; I'll contact her and see if she knows what's going on there. (It really is a very comprehensive listing.)

And don't worry, numbfoot, about feeling a little bit underqualified; we've all been there at one point of another. It's just that having this condition drives a lot of us to become experts in the area, and to devour information and literature, since so few of our doctors have a similar motivation.

Numbfoot
I have been suffering from idiopathic peripheral neuropathy for about four years. As a general rule the ideopathic variety of peripheral neuropathy does not get worse.
I have not seen any posts about how family members have reacted to the chronicity of this invisible condition?

Just an update.
I am a few months late replying to the previous post.
My family is very understanding of my condition.
We are fortunate that we are not directly reliant opon my income.
However I do still manage to generate a few dollars.
I have also taken over the cooking & have even managed to turn out some cookies & cakes.
My condition seems to have stabalised & hasn't changed much in the last 6 months.
I still take the B12 every morning.

I have PN and am 46. Mine is from disc in my cervical spine that are pushing on nerves and disc in my lumbar spine along with spinal stenosis that are pushing on nerves. It can be very painful at times. I take amatriptyline 75mg every night it has helped me very much with the nerve pain in my arms and hands at night.

i have a lot of muscle spasms in my legs, i lose all feeling in my legs and feet when i walk very far. I have started using a cane because i feel so unstable at times.

I do not have insurance and i have been denied disability but have not stopped trying. i have a hearing sometime this spring or summer coming up again.

Its an awful feeling to have this.And feeling like i am never going to be able to get any help.
i get really discouraged with it all at times.

it feels good to just see others here who do understand.

Thought I should update this thread I started.
PN has now progressed into my hands. Problems with temperature control & holding on to things. Trying to do up buttons is awkward. Still no pain fortunatly. Don't know if that is a result of taking the B12 but are not going to stop just to find out. In fact are going to up the dose from 1000 to 5000 & see if it helps.
During the latest tests they found I had prostate cancer so had to get that chopped out last year. Now any woman is safe to be with me.
Just sitting here on my hands pondering what to write next.
Once I got the all clear from the cancer, my wife & I started a new business which keeps me busy & takes my mind off my problems. So I will chug away at that as long as my health permits. I know, if I just gave up & sat around feeling sorry for myself, then I would probably go down hill rapidly.

Hi: I feel your pain (literally). My PN is also idiopathic, however, I am in the states so have some options. I agree, in general, though, that general neurologists just don't know enough about it to do anything helpful. That being said, mine did start me on Cymbalta which helped my feet a great deal. Now, two years later, my arms are starting to be affected. I am having another EMG on my arms done soon. I am seriously considering going to Mayo Clinic (a bigger hospital with more specialities, tools, etc) to get everything ruled out. I think, sometimes, we may have more than one disease or problem going on and it is often missed. Good luck!! And, I hope you, like I am, are glad for sites that feature folks with similar problems!! amy

I have idiopathic neuropathy. I have been to the Mayo Clinic and they had no suggestions for me. It starts with a funny feeling in my palate. Like a pizza burn. Then my entire torso gets squeezed and feels like it's burning. Then my vaginal. Area starts pinching. Nothing helps except taking an Ambian and clonozepam and going to sleep. When I wake up it is gone. I have tried lyrics, cymbalta, and all the narcotics. I'm now on 600 gabapentin. Can't tolerate more. Marijuana doesn't do much either.

Don't get dscouraged, everyone thinks their experience makes them an expert. It is called idiopathic NP because they have not gotten very far in finding a cause or universal treatment. My MDs have me on loads of vitamins and other suppliments and we have tried the recent meds used for the conditions, they work for some, but not all, everyone is different. Its a trial and error issue. But don't forget Physical therapy and things like boots laced up to you knees. I found that a pair of $200-300 boots custum fitted for me allowed me to forego a walker and greatly reduce my dependence upon sticks. Physical therapy has focused on transferring my balance more towards vestibular and visual. But I have severe visual problems also, but it all helps. If you are uncertain about your neurologist get a second opinion or third, this is not a simple problem and it can get really awful as I am sure you are aware. I am headed for more spinal/neuro surgery to releave the neuropathy generated by stenosis etc, it is a long battle. Remember Medicine is more art than science when it come to diagnosis. And by the way everyones experience is important. I love my boots, I can walk again!

Thanks for sharing that with us Roy.
I'm sorry I can't help you with your questions, yet.
I'm sure someone else will though.

I'm just starting to get another problem.
Don't know if it is conected to my others.
I am getting mild pain in my Coccyx.
It is tender all the time & can be uncomfortable to sit up straight sometimes.