Hi
I am a 55 yr old male who has been diagnosed with Idiopathic Peripheral Neuropathy. It started in my right forearm, and then progressed to my right shin, top of right foot and big toe. Once it started to effect the left hand side of my left foot I sought medical advice, but by the time I got to the neurologist I had it in my fingertips also. I was told that as it is Idiopathic, (having no known cause) there is no known cure, therefore no medication was prescribed. That was 12 months ago, since then the Neuropathy has taken over almost all of my right foot and progressed up to my right knee, fortunately no other areas have changed. While I am aware the effects of this condition vary between individuals, I am egger to hear from anyone who may be able to enlighten me on possible further progressions.

that is the adventurous part of PN. No one knows how or if or where your PN will progress. It may progress, stay the same or even get better if you treat the cause effectively. Have you been given a thorough work up to determine a cause? If you go to lizajane.org you will get an idea of what tests should have been done for your type of neuropathy.

Thanks for your reply.
I have had all the normal tests that are carried out in this country to establish what type of PN I have.
The website you refered me to has so far been unavailable to me.
You mention treating the cause. As stated mine is Idiopathic (no known cause)
I was told by my Neurologist to keep fit & healthy.
I still work but are finding it more difficult driving & walking.
I keep fit by cycling as often as I can but have to clip my feet to the pedals to make sure they don't slide off.
I would still like to hear of other areas of the body that can become infected. Also can the discomfort beome so extreme that some people finish up getting limbs removed.

--the Liza Jane spreadsheets are probably the most complete; they've been put together to provide tests to investigate neurological symptoms from many possible causes (not just peripheral ones, but central nervous system ones as well), and to track those results over time for patterns:

www.lizajane.org

Also, up in the Useful sites, look under my name for the links to Dr. Latov's/Quest's serological tests for neuropathy, and the Poncelet protocols for the diagnosis of neuropathy.

It's been my experience that unless one in under the care of a research-oriented neurologist at a tertiary center or teaching hospital, rarely is an extensive enough work-up done (many doctors are just not familiar with the many possible causes of the condition).

Most neurologists are clueless as to the proper care & treatment of PN.
Idiopathic is too often labeled when the doc is bluffing, clueless, and wants you to gop away.
Listen to Glenn.
Go to Lizajane.org to see all the tests that should be done.
Get yourself a neuro who is a specialist in PN & does research.
Johns Hopkins, The Jack Miller Center, Cornell-Weill, & Mayo Clinic (my last choice), are good places to find a good neuro.

That may well be true but I am limited to what is available in New Zealand.

I am still trying to access Lizajane.org but it comes up with a Network Error.

I think you are right. I've been passed to four different neurologists in the same Neurology Clinic in a very prominent hospital in NC. None of them know what is going on. My general practitioner is first to admit he doesn't have a clue - that's how I got to a specialist. I will say that going into the hospital setting each time and seeing others there - I have felt guilty about complaining about my pain - at least I can still walk. But it hasn't gotten any better - just worsens over time. My biggest fear is that I will not be able to walk at some juncture.

By treating the cause it's most likely also meant that you need to treat the nerve damage. If you look at the top of the page here there are a couple of topics labeled as 'stickies'. There's a *lot* of good info there regarding vitamins and supplements.

I was Dx with idiopathic PN also. Since I've been on this board and began using the methods given in the stickies I've had about a 90% reduction in pain and symptoms. You may be able to achieve similar results.

Just saw my GP & had my B12 retested.
The result from my Sept 07 test was 271 hence the normal reading I was given.
Have started back on the B12 suppliment.
Have read through the stickies, takes a while, there is a lot of stuff there.
Taking all that into concideration I think I'll stay on the B12 & see how that goes for now.
My symptoms are still very minor compared to most of you guys.
I have some pain in the evenings, but havent resorted to the drugs yet.

My pain has *always* been worse in the evenings. It may also have a bit to do with the fact that I'm much more active during the day so perhaps I simply don't pay sufficient attention to my feet and feel all the sensations. They get drowned out by what I'm focusing on. Right now my feet are irritating me but then whenever I sit in any kind of 'hard' chair my legs ache and my feet get that numb and burning feeling. It's nowhere near as bad as it used to be. Thanks to the information here. It used to be I *had* to have pain relief to get to sleep. It's not like it was...now I take a pain pill in the afternoon around 4:00 PM which seems to be the optimal time for me and I'm fine.