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.

hi there numbfoot, I am a fellow kiwi

Personally I have found the treatment in NZ for PN is pretty good - I have had all the testing I need in terms of nerve conduction studies, emgs etc, which I am sure you have had too. I have sensorimotor axonal neuropathy, meaning that if effects both sensation (numbness) and motor function.

It just depends on how aggressively you want to search for a cause - but one thing that I can absolutely guarentee is that knowing the cause doesn't necessarily make the treatment for the neuropathy any better. I have lupus, which causes my neuropathy, I have absolutely A grade treatment for my lupus but it does absolutely nothing for my neuropathy. My neuropathy still progresses despite treating the cause, go figure.

What your progression will be is one of those unanswerable questions - there is just no way of knowing.

I won't repeat my story here, it is rather a lenghty one, but if you search under my name you will find it easily.

What part of NZ are you in ? I am in Auckland

cheers

raglet

Hi raglet

Thanks
I am in Central Otago.
I had the tests you mentioned then spent a week in Dunedin Hospital where they done a whole heap more including Spinal Tap & Nerve Biopsy.
At one stage they had me examined by a whole team of Neuroligy type people.

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

If you can't can't get the lizajane site to open, do you have an e:mail address? They have been very helpful to me and I would hate for anyone not to be able to get them. I would be happy to scan and e:mail to them. Just PM me if you have e:mail...

Have you had a B12 test? if so what were your numbers?
"Normal" is not enough... some doctors are behind on what is really "normal".

This is the first stop in fixing any neuropathy.

Hi Numbfoot,

We have a lot in common. I live in Sydney, am also 55, male and a cyclist and the neurologists I have seen have not been able to find a cause of my neuropathy. Mine started in my feet in August 2005 and seemed to be associated with cycling. My early symptoms only appeared after bike rides. At the time I also had reflux problems for which I was taking proton pump inhibitors (nexium or somac). Proton pump inhibitors are known to inhibit B12 absorption. My B12 measurement was at the high end of normal (a single measurement), but after lots of reading I found that people who exercise regularly can have high B12 measurements but still be B12 deficient. B12 measurements are poor indicators of deficiency in sedentary people and completely unreliable in people who exercise regularly. I arranged for a gastroscopy at which helicobacter pylori (which can inhibit B12 absorption) was found. After I started taking B12 (and folic acid and a few other supplements) my neuroathy stopped progressing and improved a little. I am now left with some residual (and variable) symptoms which are not unbearable. My neurologists laughed when I told them I was taking B12 but were surprised when I told that that my neuropathy was improving. B12 is harmless so my advice is start taking it (at least 1000 micrograms per day) ASAP. There is lots of info on this forum about B12 types and doses etc. BUT ... before you start on B12 supplements get your homocysteine and methylmalonic acid levels measured by a reliable lab. If these are high you almost certainly are B12 deficient. I did not get these measurements done, so I am still not 100% sure that B12 deficiency caused my neuropathy (I am about 99.9% sure). Paul Golding has some more interesting info on homocysteine and methylmalonic acid at http://www.paulgolding.id.au.

Hope all this helps.
Good luck
Martin