Question about biopsy for small fiber neuropathy
 

I was going to get this done in a dermatology clinic far from home but my GP has just emailed to offer to do this himself next week. He says he's had a letter from the neuropathologist with instructions about how to do a punch biopsy - to be taken from my calf. Does this sound like the regular skin biopsy location for small fiber neuropathy?

I would much prefer to get it down in my home town of course and I'm sure my GP can do a simple punch biopsy but I had expected it to be done nearer my ankle than my calf - nearer to the nerve pain I was thinking? It would be helpful to have advice on this from anyone who has had skin biopsies taken for this purpose.

Here are some links. You might make sure they know what they are doing and sent it to the correct lab.

https://therapath.com/patients/patient-faqs
https://www.therapath.com/tests/skin...ber-neuropathy
https://www.therapath.com/physicians...rocedure-video

I see that you are out of the country...not sure if the links can help much except educate you.


Hope that helps.:hug:

hi ,

I had my skin biopsy done at a hospital in London by a professor of neurology. it was done at the bottom of the calf near to the ankle.

Lou Lou

Thanks Lou Lou I will ask my GP to go as close to the ankle as he can. I am guessing you mean just above the achilles tendon?

I'm not sure that would give me a warm & fuzzy if he's never done it and is using instructions. It's not like it's a difficult procedure...very easy, in fact, but still the handling and such of the samples is very important, not to mention getting the correct depth of tissue.

Let me also add that I don't understand why he (or the other place) is only getting ONE sample. That doesn't make any sense at all. I had 3 three from each leg (ankle, knee and thigh). The reason is to assess length and non-length dependent SFN by seeing the density at different levels of the leg. This is very important. You may not need all three on both legs, but at least two should be done on the same leg (ankle and then knee or thigh as the other).

Maybe Glenn will chime in with more details on just how important this is.

En Bloc you express my concerns perfectly. Warm and fuzzy i am not which is precisely why I'm asking on here. This same GP recently misled me about the results of my lumbar puncture - which turned out to have been contaminated by a traumatic tap. My guess is that although he says he wants to save me the wait and travel time he actually wants to save the practice money on expensive airfares and consultant fees. And get some professional tick boxing done and have some time off the usual coughs and colds no doubt!

And so I am worried but I must also say that my problematic symptoms have intensified many times over since I had my neuro tests in mid January and I think the autonomic neuropathy has superseded the SFN now - I'm having respiratory problems, GI problems and issues with my nose, ears and jaw. So we are seriously thinking of leaving our home and heading for pastures with much better facilities for rheumatology and neurology within the year.

So even if he doesn't do it properly as I'd like - I will continue to push for doctors to find causes behind all this - hopefully somewhere that the specialists know what they are doing. He is taking his instructions from the lead neuropathologist in the country and so I guess I have to trust that this includes how many biopsies to take. I might make an apt to see him tomorrow about my respiratory issues and dizziness and print off the link Lou Lou sent me with diagram.

Meanwhile I'm not getting quite as much neuropathic pain as I was despite the withdrawal effects of coming off Cymbalta. So it's all very complicated but I'm grateful for all advice I can get.

I would at least inquire why he would only take one biopsy and if they will do another one if the results are positive. There is NO way to differentiate between length and non- length dependent SFN with just one biopsy location.

What autonomic symptoms are you having? Any chance you can get them to do an autonomic battery?

I definitely think three samples make the most sense. Mine showed no nerve fibers at the ankle, few above the knee, and segmented and breaking down at the upper thigh, which gave me a much better idea of what was going on and how it was progressing. I would insist on several collection sites. Your doctor can probably do it, but just one site would not yield enough information.

I have just risked offending him by asking him about all this - quoting you on length dependency. I'm not getting this procedure done by him just to tick their NHS quality performance framework boxes and save them money -no way. I work as a volunteer supporting the NHS sbd public services but not donating tiny bits of my DNA to medical science if there's no gain for me and mine.

I tried to ask with charm and humour but if he blows a gasket with me in response then so be it. Almost enjoying the idea of a stand up row about how well he is remunerated to cut little bits off me and he's only going to do it if I'm reassured about your points. One calf only and one biopsy only isn't going to cut the mustard with me. My body - my SNF - my sanity all depend on feeling able to trust these people to have my interest at heart. Hopefully he will imagine bashing me over the head tk with a stick but will actually grin and say "of course I had planned to take several biopsies Mat" I am not just anither QOF (quality permanance indicator) for these doctors and will not be experimented on gratuitously just to save the NHS a few hundred pounds!

Re autonomic stuff - could easily be flu - sweating profusely or not sweatjng at all. Upper GI issues, respiration trouble with a dry cough, pain I chest wall/ ribs- dry eyes, dry nose, sores/ crusts and bleeds, earache, tinnitus, dizziness, jaw pain, no sense of taste or smell anymore, vaginal numbness, absence of sweating for months followed by nighttime drenching. Heart arhhythmia and . To be fair I think a lot may be stress related and I don't think its good to find a disease and get symptoms to fit so I'm trying to keep an open mind. But GPA/ Wegegers granulamatodis woukd tarry with many of my symptoms I admit! :rolleyes::rolleyes:

Well ive put it to him now at least. I wonder whether anything will show up. I know that my feet are often icy cold where the can move from swelter to ice queen in seconds. If he's half the brain he things he is then he will agree to do at least two biopsies on one leg or two. We will see!

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:(

Most of the time--
 

--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