Dan, most of the time shoes and socks are torture to my feet, but now that my PN had progessed up the back of my calves, pants bother me as well. (it also takes away my one refuge from foot pain, which was to sit in a recliner and hang my feet over the edge )

So yes, many of us understand. You get so tired of hearing "try this, it's so soft that it shouldn't bother you at all" from well-meaning people who don't understand that if it's touching you, it's bothering you. I didn't understand it myself when my mother got shingles on her neck and shoulder (before I had PN). I would buy her soft sweaters and scarfes but none of them helped. I understand now--sure, soft is better than scratchy, but it's still touching me!

I have tried to hold off on any meds for my situation but I am becoming overwhelmed with the pain and I can't seem to manage as a husband, father and employee. I am so scared to try anything new, due to my horrible experience with Paxil and PPIs. I plan on starting Neurontin tomorrow and pray that I don't receive and horrible side effects from it. Have any of you had any bad experiences with this drug?

I've been on it for almost a year and haven't had any trouble with it. On the other hand, I can't really say whether it's helped my pain all that much and I'm up to 3600 mg/day now. It might just be because the NP has gotten a lot worse over that period of time, so maybe I would be in even more pain if I weren't on it. I'm wondering if I should try something else like Cymbalta. Like everyone is always saying, we are all different.

My mother is on it too--when they increased her dosage, she complained of drowsiness. But she's 87 and seems a lot more sensitive to meds than I am (I'm 53).

I sure hope this med trial goes well for you--sounds like you really need some relief.

So I screwed up on one of my posts about my B12 level. When tested in August, I had a B12 of just over 1500. I recently had blood taken again (my new doc tested me for everything) and my B12 is now over 1700. Makes sense since I have been taking B12 for the past month.

The only thing I was low was my C4 test. It stated I was at a 0.17 and the normal low was 0.18. Anyone have any info on this test?

I was just wondering if any of you experienced a really quick onset of your symptoms (1-6 months) that spread across every inch of your body?

I experienced an acute-onset body wide burning sensory neuropathy (no motor symptoms, and normal nerve conduction and EMG studies--twice--indicating no noticable myelinated large nerve involvement).

Only abnormal test results that ever showed were a very abnormal skin biopsy, indicating considerable destructin of small, unmyelinated fibers, adn a slight positive on Cornell-Weill's own gross antibody agglutinin test,, which indicates some sort of autoimmune activity--although, since no other antibodies showed positive, it seems these wre unique to me, bolstering the post-infectious atuoimmune mimicry hypothesis. (No cause has ever been definitively found.)

Dan,Glenntaj,
As I indicated in my previous reply to this thread, although my sensory neuropathy started out slowly, progressing over a period of 18 months, my distal involvement has become body-wide over the last 3-4 months. Unfortunately during the last few days I have developed "burning mouth syndrome" , and I'm beginning to notice more burning sensations distally in addition to pins/needles and numbness. So I'm off to the neurologist tomorrow. Although I've been hoping to hold off, It looks like I'll be considering medication to deal with my evolving symptoms.

Dan, thanks for the response to my PM. Although it might have been too early to make an adequate assessment, I stopped the Paxil after 2 weeks in view of the on-going progression of my symptoms (and I was also very afraid of having to deal with withdrawal again). Thank you for sharing. I'll keep you posted and hopefully maybe we'll both eventually see improvement.

Glenntaj,
The relatively rapid progression of my sensory symptoms (by the way, my skin biopsy result was "0"), has had me concerned that I might move on to developing motor symptoms. I found it reasssuring that it sounds as though despite your body-wide small-fiber involvement, you don't seem to have gone on to developing motor symptoms; but I know that there's no way of really knowing...that's the scary part.
Take care,
Liz

--a neuropathy of the small, unmyelinated fibers that subsume the sensations of pain and temperature will by definition be a sensory, and possibly autonomic, neuropathy; those fibers have no motor component.

Unfortunately, since the small fibers are also involved in autonomic response, such neuropathies often have effects on such functions as blood pressure, sweating, and sexual response, though for many the effects are not large, often remaining "subclinical":

http://neuromuscular.wustl.edu/senso...tml#idiopathic

Many neurologists disagree on the the extent to which neuropathies can present with only small-fiber effects; some think that whatever is causing such "axonal" damage is likely to have some effects on the axons of even myelinated nerves over time, and that can have effects on the senses of vibration, mechanical touch, and position, and/or motor effects. Motor neuronal tracts tened to be deeper within the fiber boundles of larger, myelinated nerves, though, so they tend to be affected more slowly, if they are at all. Even in compressive syndromoes, it takes more compressive force to disrupt them--not that that can't happen, but the sensory symptoms are usually first in those cases.

Personally, I believe neuropathies with an autoimmune etiology may more likely stay confined to one type of fiber or antoher, due to the difference in sturcture among fibers and the specificity of antibodies ("molecular mimicry"). But add other things to them--glucose dysregulation, compression--and more global symtpoms are likely.

Did nothing for me, even art 4000 mg per day, so I'm off of it now. Didn't have any bad side effects though, and am appearing to recover. *