Sensory Neuropathy
 

Hello everyone,

For the last 3 years I have experienced tingling sensations in many different parts of my body every day. Occasionally I feel pin prick and hot/cold sensations. I have seen many different neurologists including one at the Mayo Clinic. I have had many different tests, and all results were normal. I was told that my symptoms are probably due to my central nervous system losing its ability to filter out extraneous signals in my peripheral nervous system, possibly due to stress/anxiety. I was also told that it would probably habituate over time. I just recently started getting these awful burning sensations in my hands. I started taking Cymbalta that my neurologist prescribed and Metanx that my primary care doctor prescribed, and the burning sensations have decreased substantially, but sometimes my hands feel very irritated and the tingling has not gone away. I asked the Mayo neurologist if he could recommend any supplements and he said he could not recommend any because they are not regulated.

I hope that some of you will be able to give me advice on whether or not there is anything I can do to get healthy. I am 26 years old, and I was supposed to start medical school this year, but I decided to defer for a year in order to attempt to find the proper treatment for or resolve these health issues. Thank you so much for taking the time to read this.

Hi
 

I am in Oz, and have read how highly regarded Mayo is. I don't think we have the equivalent here. So basically your neuro at Mayo said stress is doing this to you?

A lot of people post the same thing that doctors are chalking most everything down to stress that they cannot find a diagnosis for. Your very young still for stress disorders And this started when you were around 23??

If I were you I would want to ask what has been ruled out and get copies of bloodwork, reports, and testing that you have had done. It,s important o you can make sure there is nothing that actually needs real treatment like a metabolic or autoimmune disorder.

As far as school is concerned, it's based on entirely how you feel, but this illness has a way of turning people into spectators rather than participants in life. I have been angry at myself for missing so much. I found that when I pushed myself, it wasn't as dreadful as I imagined it was going to be.

Best of luck to you matey.
Aussie

Unfortunately--
 

--while Mayo does have a world-class neurology department, a lot of anecdotal evidence from people who've gone there doesn't seem to speak well for their expertise in the particular area of peripheral neuropathy (they seem to have more knowledge of other neurological syndromes).

When it comes to peripheral/neuromuscular disorders, I think Johns Hopkins, Cornell-Weill/Columbia, Jack Miller, Washington University St. Louis, University of California/San Francisco, and Jacksonville Shands may be better bets (all of these house some of the world's leading researchers into neuropathy).

Is it possible that this could be a small fiber peripheral neuropathy? I've read that most testing comes up negative with this disorder.

Have you had a skin punch biopsy? That is usually the most significant test for small fiber neuropathy. It won't show cause, but it does give important information about the small nerve fibers.

No. I guess the 6 different neurologists I've seen didn't think it was necessary.

neurologists and underutilization of skin biopsies
 

Hi, it was not until seeing my fourth neurologist that a skin biospy was ordered, even though I had suggested it as a possible procedure to numbers two and three (I had done my own research and strongly suspected that I had small fiber neuropathy before seeing my second neurologist. Yet both of them, one of whom was at one of the Mayo Clinics, could not figure this out!) So on my fourth neurologist...he seemed a bit miffed that one had not been ordered previously. He ordered one the first day that I saw him. Bam, came back that I had small fiber neuropathy. I was so angry that for a while I considered suing the previous guys for not doing what I, the patient, had figured out ought to be done.

Point is, it's been my experience that neurologists are either ignorant of small fiber neuropathy to an extent or skin biopsies are just woefully underutilized, or both.

Next time you see one, if you are still having the sensory problems, you might want to demand one or demand to be referred to a neuro who does one. Maybe it won't come back as sfn, but that test would be the best way to figure out whether it is that or not.

Autoimmune? Sjogren's Syndrome?
 

Hi! I have Sjogren's Syndrome and experience many neurological/cns symptoms. 3 neurologists and many tests have come up with nothing. Rheumatologist says it is Sjogren's. I'm having an EMG next week. Little is still known about Sjogren's *edit* Lots of luck.

Advice
 

Hello futueDO,

I am not a doctor or work in the medicai field. We have some similarities of issues you have faced. Have you tried to use a TENS machine or an inferential machine to reduce iyour pain?

Keeping in mind that we're not doctors or medical professionals here -- it's a peer support site -- we tend to do & share a lot of our own research, as most doctors either don't know about, or don't accept some of the new research (as you've found). My own philosophy about self-treatments is, If it can't hurt to try it, then it can't hurt to try it.

R-Lipoic Acid works really well for controlling the burning pain of my PN; it's also been shown useful in treating Burning Mouth Syndrome.

Many are using it in conjunction with Acetyl L Carnitine and/or CoQ10, and I get further benefit with Pantothenic Acid (B5).

many of us also take various other B vitamins, complexes, and supplements that have been shown in legit studies to help neuropathies & nerve health.

My suggestion then, is to peruse the archives, Sub-forum, and Sticky Threads (e.g. Neuropathy does improve), and see if anything looks promising that wouldn't hurt to try. As far as further testing/diagnosis, check out http://www.lizajane.org/

Doc