I have had idiopathic PN for 20-30 years, I am 62, however it was not formally identified until 11/05 during a work up by a phsyiatrist (spelling may be off a bit), an MD specializing in physical medicine. This work up was pre-surgical in nature for severe stenosis. He was trying to sort out exactly where the spinal cord was most restricted as the stenosis is effecting far more vertabrae than can be safely operated on. At the time my left foot was not sensing pressure and the right foot was not far behind, as expected my balance and walking ability was severely impaired. I also, leg pain and leg sensory problems. The laminectomies releaved many of the symptoms of neurological impengement and I rapidly regained much of my balance and feeling in both feet except the toes. Since then the idiopathic NP as has gradually accelerated. By 3/2008 it had progressed up both knees and feeling on the skin is gone on large areas around the knees, by 6/2009 I noticed that I was dropping things, particularly really smooth things like plates, the communion wafer at church, glass wear etc, it had jump to my arms and by 9/2009 it had enveloped all my epiderm up to my jaws. Since then there is no place left that does not have the NP, my entire periphery is effected now. I have seen two neurologists and another French physiatrist. All four MD have independently examined me, each in considerable detail and came up with same diaqnosis, plus the neuropathy has extended into nerves that control my leg muscles, it is no longer strictly peripheral. To avoid using a walker I went to White's in Spokcane, WA and got knee high boots fitted. Snugg leather boots, tighly sinched plus four years of PT have kept me going with no little difficulty. For me NP is very fast moving now, my neurologists point out that I am a long way down the road (perhaps 30 years) most folks have onset in their late 50s and don't get to where I am until they are 80 or 90. I don't rightly know if that is true or not as my daughters' soccer coach is much younger than I but is in much worse condition. This NP frequently remits so people improve, next year you might accomodate and feel significantly better. Through PT I aggressively try to accomodate the advances, it is not easy.

Here are my questions, to any of you that are a long way down this road, are you having trouble sleeping, or needing excessive sleep. I tend to require 12 or more hours per day and I still feel I am in stuper. I am on a host of antioxidants and vitamins and neurological meds. As this progresses I seem to require enormous amounts of sleep. Also, low pressure systems really excite the problems. Only thing I get from my MDs is that most people are not doing as well as I am at this stage. Has anyone found these sleep problems and how are they accomodating them, besides sleeping all day

Whoa!
Man can I empathise with you. I am a 52 year old male who started having problems about 3 years ago. Problems started in my right hand - numbness and burning and pain got so bad that after 2 hours of mousing (right handed machine designer) that I felt like throwing up and then started gabapentin - 900mg/day. Diagnosed as occluded ulnar nerve and had double surgery on my wrist (2" cut) and inside forearm (6" cut thru muscle) to cure the problem. Worked for about 6 mo. and then all problems came back progressed up past my elbow. After about 12 mo. it appeared in my right foot and started with the big toe going numb and then the whole foot followed (with shooting pain from the toe back to the heel). Next the left hand on top up to the wrist and left big toe and top of foot up past the ankle (all within about 6 mo. time).
I am now taking 1200mg gabapentin 3 times a day to control pain but if I miss a dosage pain in feet and right hand reminds me - aldo have burn thru even with this dosage. I was diagnosed last week with Small Fiber Polyneuropathy at the Cleveland clinic. I also have hypertension (160/100)
that is partially under control (was 240/110). A little anti anxiety medicine helps as well. Good luck and keep a posoitive attitude and I have found that sharing with others helps quite a bit - I used to keep it all inside but that is not the way to go.

Hi Kevin
Sorry to hear you've joined the club.
Sounds similar to me.
I found the pain stopped after I started on the B12.
Not saying it cured it, but thats when it stopped.
I have got pain relief but don't use it at all.
Was any cause for your Neuropathy found.

I see it's been 4 Months since I updated this thread.
Well the 60x R-Lipoic Acid went through the system un-noticed, so I've put them on hold.
There has been no noticable changes in my symptoms in that time.
I am still fortunate that I don't have any continuous pain. Occationally I might get a servere cramp like pain in any of the effected areas, but it only last a few seconds.
Regarding driving with an effected right foot. I can feel pain, moisture & temperature but not pressure. So I have a few problems driving a vehicle with a manual transmission.
Anyone else been down this road? (no pun intended)

I have been diagnosed with Idiotatic peripheral neuropathy about 4 years ago. I have numbness in my feet and a heavy burning sensation from my feet up to my knees. My doctors have given me all the tests but nothing indicates why I have this condition. Last year he tried me on gabapentin. I was on an average dose for 8 months and it did absolutely nothing to relieve my pain. I discontinued taking that medication. A few months ago he started me on Lyrica and I felt almost immediate relief. I take 3 50mg tablets a day and I can honestly say about 70% of the burning sensation is gone. However, I still have the numbness in my feet. Nothing seems to work for that. As far as I am concerned I am very pleased with the relief I get with Lyrica. I wish it gave me more relief - i.e. my numbness, but it is definitely better than no relief at all. You might want to discuss Lyrica with your doctor.

I've been diagnosed with Idiopathic progressive neuropathy. I have lost about 80% feeling in my feet and am starting to have symptoms in my hands. The tips of my fingers feel like there are callouses on them and am starting to fumble with things. Walking on uneven ground can be crazy at times and embarrassing at others. The thing that most concerns me is the term progressive. I'm scared that it may move at an aggressive rate and I won't be able to enjoy time with my son (age 2) as I have with my 2 older daughters (ages 15 and 11). Time will only tell.....

Hi everyone. I have also been diagnosed with a idiopathic peripheral neuropathy. Im a 22 year old male from Sydney Australia.

I have tingling and electricity feelings going down my spine and paresthesias over my arms and legs with hot and cold alternating at times.

I just wanted to post so i can talk to others with this same problem.

My life kind of sucks at times, i have little friends and mostly keep to myself and family.

A lot of the times these symptoms make me extremely ****** off and agitated sorry to be blunt and feeling like i want to bash or destroy something when i think about it and i ask myself why me...

My symptoms have mostly stayed the same they are much worse in cold weather and keeping warmer with warmer clothing makes me feel better and i have less symptoms then.

Sorry to hear that.

Your need for warmth.... were you tested for macroglobulins in the blood? This symptom is a sign of increased proteins circulating in the system, which react to cold temps with increased symptoms.

http://en.wikipedia.org/wiki/Waldens...roglobulinemia

Also you can look up cryoglobulinemia, whose symptoms are intolerance to cold.

--if you've got tingles going up and down your spine, has the spine itself been MRI'ed or otherwise checked?

Problems with the brain and spinal cord can exactly mimic, symptomatically, those with nerves in the peripheral areas (one reasons investigations into neurological symptoms are often so long, expensive, and process of elimination).

Where Can I find the most recent psts on PN?

Ritt