Idiopathic Peripheral Neuropathy
 

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.

As far as a comprehensive list of tests goes--
 

--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 :D

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.

I do see--
 

--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. :D