I'm 55 and developed peripheral neuropathy back in 2003 when I contracted West Nile Virus. At the time I had meningitis and encephalitis and probably Guillain Barre (fortunately I didn't have to be on a respirator). But my doctors were really clueless and didn't try to get a confirmed diagnosis on any of the nerve damage.

Like many of you I've had severe pain, mostly in my legs, paresthesias that were absolutely tormenting - like being buried in an ant hill - and various degrees of numbness, tingling, etc. It finally got to the point that the gastroparesis was so severe I was losing a lot of weight and couldn't sleep at night.

I finally got a physiatrist to do an EMG and he discovered axonal damage in the thoracic spine area but normal nerve conduction in hands. It was not an extensive EMG like I've had in the past, just kind of cursory to get an idea what's going on. I've seen four neurologists and all were dismissive, probably because I wasn't asking for medications, just diagnosis. But I will try another one to see if we can finally get to the bottom of the neuropathy.

I just had an antibody screen and the only thing that came up positive was IgG anit-GM1. I don't have any motor neuropathy other than the gastroparesis, just sensory. If I try to do any exercise, even walking a few blocks, my spine goes numb, pain starts radiating across my torso and it seems like every nerve ending in my body from my scalp to my toes feels like it's being shocked. No one will explain this so I'm requesting a skin biopsy to look for small fiber neuropathy.

It's interesting that many of you seem to react to showers...I've tried to tell doctors what torture that is and they just say I'm probably reacting to something in the soap or water. For years I tried various soaps, detergents, even shower filters to try to deal with it because the itching and burning would last for at least two days...if I get hot the same thing happens but it stops as soon as I cool off. Clothes can feel like they have shards of glass in them - sometimes I change four or five times before I'm reasonably comfortable.

So I'm curious if any of you have the anti-GM1 antibodies and if so, what condition were you diagnosed with? We thought CIDP was a possibility, but I don't have much motor neuropathy. I have no other autoimmune markers.

And for those of you with exercise intolerance, do you know if it is harmful to exercise when you get those symptoms? It seems like it would increase demyelination and cause the immune system to further attack the nerves. But I don't want to be totally static - I used to be a personal trainer and rehab therapist and it's hard to avoid exercise!

Thanks for any insights and suggestions -

Jan

It looks to me like you have post infectious neuropathy. I believe it is fairly common. I had a Lyme infection in 1994, well documented. I don't know for sure if that is what triggered all this, since I had an auto accident and also have thoracic spine issues, including herniated discs.

My doc has mentioned ganglionopathy. I also have autoimmune issues, with a positive ANA.

Much of what you say rings a bell, but now, it seems that the sharp symptoms like clothing sensitivity have died down a bit. I have autonomic neuropathy and that causes me the worst issues.

Welcome to the family!

Fortunately I haven't had too much autonomic neuropathy, just digestive problems (gastroparesis). It's only a certain section of my intestines that are affected but it can hurt like crazy at night. Most of my symptoms get worse lying down or exercising.

I've wanted to try IVIG for a couple of years but so far no one would order it. I have high antibody titers for several viruses which probably keep the nerves from healing. I'm seeing an immunologist in two weeks that is a strong proponent of IVIG therapy so I'm hoping he'll work with me and at least give me a trial to see if we can clear some of these things.

I have seen quite a bit of improvement with the leg pain over the past several years. At first it felt like someone had poured concrete into them and yet the doctor could stick me with a pin and I wouldn't feel it. I told my husband it was like I was suddenly on a planet with increased gravity and I was being pulled into the ground - sort of the feeling you get on a roller coaster when the g's hit you.

I think the hardest part for me is just the extreme, constant fatigue.

Jan

Geez - you have an awful lot of pain/discomfort. Were you tested for small fiber neuropathy, because it sounds like you might have it, and cycleclops is no doubt right that your neuropathy happened as a post-infectious reaction. I had post-shingles neuropathy in 2003, but it went completely away after 5 - 6 months.

If not, the only definitive test for that is skin punch biopsy. Not EMG, because it won't pick up small fiber neuropathy. That could be why clothing feels like shards of glass.

I have small fiber sensory neuropathy, but most of my clothing only feels like sandpaper, not to the extreme yours does. And showers feel like needles into the skin. Every doc has assured me it has nothing to do with post-shingles neuropathy.

If a Dx is what you're after, then maybe a skin punch biopsy? It's a piece of cake - just be very careful with at home care so as not to get an infection.

Hope you find a combination of things to afford some relief.

Best wishes,

Sheltiemom

I'm so sorry what you are going through.
BOY can I relate to the leg pain issue!! Everything you describe about it sounds spot on to what I've been dealing with. The fire burning sensation combined with heaviness. It felt like my legs weighed 200 lbs each!
Some of us wear our socks inside OUT because the inside feels like sandpaper.
Your constant fatigue.......

One of the first Q's I always ask is how is your thyroid?
It can play a part in some of your symptoms perhaps.

My heart goes out to you.....
You'll get much support here. (unlike all the dismissive Dr's you've encountered)
They seem to pride their capability of associating our pleas for help as some sort of 'depression' or menopause or.......good Lord, the soap we use.

There is much information packed into the Peripheral Neuropathy subforum on tips,resources, supplements and other pertinent info
Check it out.

Caring
Rae

Thanks for the replies. It's good to "fit" somewhere :-)

Can you tell me who did your punch biopsies? I asked the physiatrist who did my recent EMG and he said he couldn't do it but I should call my dermatologist. The dermatologist said he's never done one and that I should ask my neurologist. I can't get into my neurologist until October and would like to have it done before my appointment since I probably won't see hiim for another three or four months after that. It's really not much different than excising a mole with a punch tool, so surely there are dermatologists who can do it. Did you have the site cauterized afterward or did they use any stitches? That would seem to be the best way to avoid any infection (I can't use topical antibiotics, just hydrogen peroxide).

Also have any of you reacted to MRIs? I have a muscle disease that causes my muscles to relax after contracting about 10x more slowly than a normal person so when the fields during the MRI rapidly go back and forth my muscle cells can't keep up with the change in polarization and I get shocked.

I thought I would try again with an open side MRI and see if it might reduce the static buildup, but an MRI safety researcher told me that the magnets can also stimulate the peripheral nerves and some people have very uncomfortable shock-like sensations with burning or numbness. Just curious if anyone experienced that because of nerve damage.

Jan

Johns Hopkins has a skin punch biopsy mail-in package with instructions- for the doc to 'do-it-yerself'. Any PCP worth his salt can do it, but you can go to a dermatologist if'n ya want. Your doc sends the samples back to Hopkins, and they do the analysis
Its just 3 band aids. The surface about he size of a dime and similar to a 'road rash' injury. Takes about 1-2 weeks to heal. Antibiotic topical is all that's necessary. Hardly notice it. Least invasive of the tests I've had.

That sounds good. I saw a company called Therapath that has a kit they send to the doctor but I think I'd trust Johns Hopkins more to do a good job of interpreting it.

Jan

The doc who did my skin punch biopsy was a specialist in the Neurology Department of The Cleveland Clinic, which is local to me. She was the only doc who did them, but I don't think she was a dermatologist. If you want, I can find out what sort of specialist she is so that at least you'll know.

My aftercare also involved keeping a band-aid on each of the three sites for
X amount of days - can't remember, but changing them each day. The sites were definitely smaller than a dime. Can't even see where they were anymore.

--for analysis of intraepidermal nerve fiber density is a circular sample 3mm in diameter and 1 mm in depth. Considerably smaller than a dime, and not requiring stiches. It's smaller than the average excision that a dermatologist would do for almost any suspicious skin lesion.

Any dermatologist should be able to do the biopsy--it's the interpretation one needs specialized instructions/facilities for (electron microscopy is used along with specialized staining). I agree that the Hopkins program might be the way to go, as they will not only interpret but send the dermatologist specific instructions, packets to send the samples in, etc.

I'm not surprised that dermatologists/PC physicians wouldn't know how to interpret the results--it's outside their realm of expertise (though, of course, as we have vested interest in knowing about this stuff, it's not outside ours). But a dermatologist who doesn't know about the existence of this procedure by now is behind the times.