On the 'Idiopathic Sensory Polyneuropathy Syndromes' link:
http://www.neuro.wustl.edu/neuromusc...tml#idiopathic it states that the onset for this category of PN is the legs. Does this mean the legs as opposed to the feet? Is this the experience of most of the people who fit this diagnosis?

Also do you have days when you have increased burning/discomfort in one area? For example today for me is a 'hands' and 'knees' day. Yesterday was a 'thigh day'. Another day may be a 'lower legs day' or a 'face day'. This doesn't mean that the 'burning' is not in the other areas concomitantly but one or two areas overpower the others!

In that link posted above it also says that the "Course is slow partial recovery". Does that mean it will recover without anything being done?

No, I do not think it means "legs" as opposed to feet. And slow partial recovery is good to read. It's my experience, and that of many others, who have taken the "healing program" to heart, and exercised, reduced stress, taken supplements, even when we didn't feel like it. Especially the exercise.

It's amazing how much of the "loss" is due to disuse. Use it or lose it, and if you stop feeling it, you tend to stop using it. Also, bodywork which improves circulation to nerves, and enables them to get a good food and energy supply, is important. Keep reading, and you'll hear more about working to be well, with this diagnosis.

But first, yes, there is fear and lots of tests and lots of panic. This is once we settle in. The main complication is complications from becoming sedentary and gaining weight. The cause of death from idiopathic pn is related to type II diabetes, heart problems, etc. Not from the nerves.

Its interesting that everywhere I have read says PN starts in the extremities, yet it started for me in at the top of my left arm, I had a small numb patch for a few months in 1998 and after that it was only noticeable on the left side of my face and my left arm for quite a long time it didnt really hit the legs or feet for a few years.

When I get days of increased numbness/altered sensations it is usually everywhere at once, ie if my face feels particularly odd/numb/altered sensation then the chances are my back feels more numb(dont get altered sensations on my back just numbness),and my left arm and hand feels numb/altered sensation, its all very strange.

So far since saturday I have had a let up from the symptoms,quite a big let up, the tingling in my hands and feet are barely noticeable and the numbness and altered sensations are also barely noticeable,its the 4th day now so I am waiting for it to suddenly come back though...

Hey Mark, that's a great sign of improvement! Just curious, what are you trying to do to improve your symptoms?

Hi there the main things that I have done is quit smoking which seems to have helped in the past 4 weeks,stopped drinking any alcohol for months (I was never a heavy drinker but even having one or two tended to bring on the symptoms sometimes) and I take a range of supplements which may or may not have improved the symptoms (the symptoms I described can come back at any time unfortunatley and can sometimes seem to be brought on by certain supplements but it may just be coincidence...) I have put a message up on your thread about vitamins that says which supplements I take.

I have had periods before where the symptoms seem to clear up but its usually short lived,if they remain as diminshed like they are at present,for longer than about 10-14 days then that really will be something. I hope the info you get from this forum will help you try and get some relief from your symptoms.

Well I hope the relief lasts a long time, keep us posted.

Megan--in that Washington University Neuromuscular Lab material, the part about "slow partial recovery" refers to idiopathic syndromes with acute onset, rather than a long, slow one; these syndromes are generally suspected to have autoimmune (molecular mimicry) mechanisms involved, often post viral or post-bacterial, and are considered to be sensory nerve analogues to Guillan Barre syndrome.

This is the type of situation I'm apparently in, and yes, the skin biopsy material seems to show a slow re-enervation over time. It's unlikely I'll ever get complete recovery and be symptom-free, though I'm much better than I was two years ago. One of the effects that I've been left with, however, is a tendency to pressure palsy--I am much more prone to compressive nerve effects than a "normal" person would be (and I bet a lot of people would report this for neuropathic syndromes--its much easier to compromise an
already damaged nerve). I suspect this is contributing to my right side C5/C6/C7 radiculopathy with right arm/hand symptoms, which is a bigger concern for me right now.

And in response to many people's questions--yes,the most "typical" presentation of peripheral neuropathy is for it to affect the longer nerves in the body first; this is a "length-dependent" neuropathy usually caused by some ischemic/circulatory mechanism such that nutrients have a harder time being carried farther away from the body center, and toxins have a harder time being transported out. so that the extremities feel dysfunction first.

BUT, this is hardly the only presentation. It's certainly possible to have neuropathy symptoms starting anywhere there are nerves. In nerve root neuropathy--radiculopathy--symptoms will start wherever the compressed root leads. There are autonomic syndromes that are announced by internal gastric symptoms. There are trigeminal neuralgias of the face, and toxic neuroapthies that have truncal symptoms. So, one should not assume that one is going to feel symptoms first in one's toes.

Of course, where the person feels symptoms may be an important clue as to what is happening--but it is true that too many doctors, even neuros, think that if one has symptoms beyond the toes/fingers it isn't a peripheral problem. Obviously, one should be tested for central nervous system problems as well--and the fact that symptomatically, central problems can exactly mimic peripheral problems doesn't make it easy--but the assumption shouldn't be made.

Glenn, what would you consider "acute". Is symptoms that get worse over a week or two/maybe a month considered acute?

I don't remember seeing this

http://www.hopkinsneuro.org/disease....sory_Neuropath
some ideas about SFSN - idiopatic

take care

--in neurological circles generally means an onset of major symptoms, starting from a "no-symptom" state, that occurs in days to weeks. With neuropathy, generally anything that gets to a severe state in under three weeks is labelled "acute onset"; anything that gets that way in a month to three months or so is labelled "sub-acute onset".

If the symptoms take more than three months to "peak"--or definitely more than six months--the condition is likely to be labelled "chronic".

There is certainly some overlap, especially with the acute and sub-acute designations, but generally things come on very quickly, or very insidiously.