A good physician would welcome an intelligent question showing personal interest in ones own health and testing.

Not sure I see much autonomic problems in your symptoms, but I do see signs of Sjogren's...which I know you've considered and been tested for. I can't remember, have you had the lip biopsy?

The sweating, GI and heart arrhythmia (all depending on what it is exactly) could be autonomic. The skin biopsy does look at autonomic fibers as well, so maybe this will provide some useful information for you.

Hopefully soon you will have some answers. Please keep us posted.

Thanks I will certainly let you know the outcome.

But I have another question before I go. For three nights now ive hardly suffered any of the usual burning or tingling pain I have been woken by almost every night for about two years now. The wet sensation iny legs had been much less of an issue too. I have had record amounts of intense flashing pain around my body - especially in hands. I have also felt very stiff and sore in my joints and tendons. The main feature of the past few days has been in my head, chest and tummy because I have a flu virus presently and am coughing a lot, experiencing respiratory difficulties and ear, nose and jaw pain. I've gone from a person who never sweats anymore to crazy amounts of sweating in the night.

My main question is, has the small fiber neuropathy gone away for good or is it just refiguring itself while my brain prioritises the nasty flu symptoms? I've done very little exercise at all because ive been bed-ridden with fever and coughing - taking only the odd panadol for pain as Cymbalta clears my body finally. Can anyone shed any light on this development for me and would it affect the results of my forthcoming skin biopsy I wonder?

[QUOTE=MAT52;1128840]Thanks I will certainly let you know the outcome.

But I do have another question before I go. For three nights now I've hardly suffered any of the usual burning or tingling pain that I have been woken by almost every night for about two years now - glove stocking distribution. The cold wet sensation iny legs had been much less of an issue too. I have had record amounts of intense flashing pain around my body - especially in hands. I have also felt very stiff and sore in my joints and tendons.

The main feature of the past few days has been in my head, chest and tummy because I have a flu virus presently and am coughing a lot, experiencing respiratory difficulties and ear, nose and jaw pain. I've gone from a person who never sweats anymore to crazy amounts of sweating in the night.

My main question is, has the small fiber neuropathy gone away for good or is it just refiguring itself while my brain processes the nasty flu symptoms? I've done very little exercise at all because ive been bed-ridden with fever and coughing - taking only the odd panadol for pain as Cymbalta clears my body finally. Can anyone shed any light on this development for me and would it affect the results of my forthcoming skin biopsy I wonder?

Hi there,


Just with regards to the skin biopsy, when I arrived at the hospital I too was expecting them to do it at 3 sites as this is what I had read.

I questioned this when they proceeded with the biopsy, they told me they do not need to do this. I told them about the non lenght dependent thing and they just dismissed it. I don't think they do they do the 3 sites in the uK.

Mine showed that my nerves were re-generating too much, which was in keeping with neuroinflammation or an autoimmune disease. He also noted it had been seen after chemo, or medication. Mine could be caused by metronidazole. I am still under investigations.

I hope it all goes well for you.

Lou Lou

Thanks Lou Lou. I think mine might have been caused by the combination of Methotrexate and Hydroxichloraquine over a few years as nothjng has flagged up to say it's immune mediated or part of my RA.

How many punch biopsies were done on you in the end - just the one? Hopei haven't offended my GP by querying but I don't want to have bits gauged out as just a tick boxing exercise! I'm really hoping that after two years it has all just gone away suddenly now as third night of not having to wake and spray hands and feet with magnesium oil to cool down! Or alternatively maybe the B12 tablets are at last doing something?

Thanks for your help.

Ps GP responded that he would take two biopsies at least - but no guarantees the histology will be useful of course.

Yes, I have heard it is important to take from more than one place. I only had two. It turned out that the spot taken from my mid thigh turned out to be much much worse than the one down at my ankle. It definitely confirmed that the damage is significant and what is happening. Now if they could only find out why its happening

--the skin biopsy protocol for measuring small-fiber condition and density involves taking samples from just above the ankle and from the upper thigh, at least, as these are the sites that were "normed" in the original Johns Hopkins protocols.

At good academic neuropathy centers, there might also be a sample taken from the knee area, or even from the upper arm just above the elbow, as these sites were also normed by later research.

But there should be at least the two leg samples taken for exactly the reason en bloc mentions--there needs to be a comparison between distal (ankle) and proximal (thigh) sites in order to determine if there is length-dependency or not.

Hi there,

Just to let you know,they took 2 spots next to one another just above the ankle.

Good luck with it.

Lou Lou