Peripheral Neuropathy

[Dizzy Dame]

Hi all,

When I went down to Vandy in January, I was diagnosed with peripheral neuropathy in my feet and right hand after a sweat test showed I'd lost the ability to sweat in those areas. At the time I wasn't very concerned because other than having cold feet all the time, I never noticed any signs of nerve damage.

However, over the past few months I've started having more symptoms. I get burning feet at night, where the bottoms of my feet feel like they've been dipped in boiling water, and sometimes the tips of my toes go numb. I've also been getting the same feelings in my fingertips on both hands, like I have blisters on my fingertips and touching anything hurts.

I have an appointment with a neurologist in August, but I'm really worried something horrible's happening in my body. I mean, I can handle having POTS, but I'm a writer. If I lose feeling in my hands I don't know how I'll be able to write. The strangest thing is that my POTS is getting better, so it doesn't make much sense that my nerve problems would be getting worse. Ya know?

I was wondering if any of you have neuropathy like mine, and what's causing yours, and if it's gotten worse over time. The doctors at Vandy who diagnosed didn't offer an explanation.

Thanks,

Lauren

[MomtoGiuliana]

I get these symptoms--they come and go. I would not assume this is something that will become progressive until a doctor tells you they think it is. I have had a flare up of this very thing in the past week or so--started with tingling in my feet and now I get sharp pains and burning feelings, mostly in my feet. MY experience is that it eventually recedes--and I don't get the symptoms again for months to a year or more. Overall, my POTS symptoms are extremely mild--but once in awhile this or that symptom will re-surface. I have had all kinds of tests and evaluation and I don't have MS or anything progressive, etc.--I just figure it is part of POTS! I do understand your anxiety/concern--hope you can get some answers--and that it goes away!

Katherine

[calypso]

I have a loss of sensation in my fingers/hands, and somewhat in my feet. I also have a reduced sense of smell and taste. All of this began about six to nine months ago, and it has gradually been getting worse. I often feel like I am wearing a glove when I touch things, or when things touch me. Sometimes I will be washing dishes and spill water all over my leg, but not even know it until I see that it's wet. It is very strange stuff. I have no tests scheduled and no explanation for any of this. If I ever get it figured out, I will surely report back. But honestly, I have very little faith in Western medicine for figuring stuff out like this. If an EMG doesn't show something specific, forget it -- it doesn't exist to doctors. And even if it is detectable, it is then treated, but no one wants to figure out the cause, which would ultimately prevent it.

Amy

[vemee]

Dizzy, I was at Vandy shortly after you were and Ialso was positive for small fiber neuropathy. Symptoms started 2 years ago with pins and needles in both feet then lower legs, forearms and hands. I would also have stinging in the face and trunk. Once I got on cymbalta the pain was not noticible. When I had to get off cymbalta for Vandy the pain in my legs and hands were not so bad but I had an almost constant burning on my chest and abdomen. The doctor found several places on my feet and leg where my feeling had decreased and the nurses found a painless place on my arm for an iv (unfortunately they only found it once).

I live in Hanover County outside of Richmond, Va. so when I got back I went to the neurologists at UVA. They did an emd and found nothing which is typical for small fiber neuropathy and said the q test indicated a mild neuropathy which surprised them since they expected more damage after seeing the results of various tilt tests.

They did not know what was causing the face and abdomen pain but suggested I be tested for diabetes which so far the results are always negative. They told me that the neuropathy might get worse down the line but for now they do not see me having any major problems.

On a side note, have you received the results for the 24 hour urine test done at Vandy?

[Dizzy Dame]

Thanks guys for your response. I guess it's a bit of a relief to know I'm not alone. I'll let everyone know what they find at Hopkins when I go. In the meantime, I guess I'll learn to ignore it (just as I have with all my other wacky symptoms).

Vemee,

I did get the results for the Urine test, nothing abnormal although my catecholamines are higher than normal. I'm right on the border for Hyperadregernic (sp?) POTS, but not quite there. Dr B said that I have "Hyperadregernic features" whatever that means.

Hugs,

Lauren