Finally got some information from tests and skin biopsy can anyone translate into plain english please.


Sensory testing showed normal thermal thresholds from the arms and the soles for cool sensation, whereas warm sensation threshold were elevated particulary in the left sole.There was a suggestion of cool allodynia in the soles, and to a lesser extent in the palms. If anything heat pain thresholds were also decreased, suggesting hypersensitivity to noxious stimuli.

In keeping with the above, skin biopsy from the right calf showed normal values for the gold standard structural marker PGP 9.5 but with markedly elevated nerve fibres for the heat Capsaicin recepter TRPV1 and regenerating fibres with Gap43.The biopsy shows over expression of ion channels that are related to pain, and this is something we have seen in other patients with an inflammatory proximal affecting the dorsal root ganglia or the nerve roots.

We have also sometimes seen this pattern in patients with toxic or post-chemotherapy neuropathy i.e abnormal regenerating fibres, but there is no suggestion of such a condition here. I note that autoimmune tests were negative, and while her ANA was weakly positive at 1 in 40 this is considered clinically insignificant. The clinical features and biopsy also suggest that she does not have a channelopathy such as Nav1.7.

I would be very grateful if anyone can decipher this.............Marie

--from the first paragraph a form of qualitative sensory testing was performed, and from what they've written there may be some disruption in proper interpretation of sensations of heat and cold, which are the province of small, unmyelinated fibers in the skin.

Allodynia refers to the sensation of pain in the absence of painful stimuli. Many people with neuropathies, particularly of the small fibers, have this as a symptom--small, unmyelinated fibers also control the sensations of pain (particularly those tied to very high or very low temperatures); damaged nerve fibers tend to spontaneously signal to the brain even when the stimuli are not there. In the case of pain, these signals tend to produce a burning, angry sort of pain that seems to radiate out from the skin, very different from that associated with a pinch or a bruise (what kind of symptoms are you experiencing?).

It would be good if the skin biopsy report contained actual values for intraepidermal nerve fiber density (did they only biopsy one site?). The PGP 9.5 is a stain that is used to reveal the presence of these small fibers--that seems to be "normal" (though it's hard to tell without numbers, and, as I've written in other posts, no one knows where you "started" in terms of density before symptoms, so it's hard to say whether whatever figure would be normal for you--there is wide variation in the nerve fiber densities among people, and the "abnormal" criterion according to the McArthur protocols is rather narrowly set, I believe, at below the 5th and above the 95th percentiles). The finding of elevated heat receptors is suggestive, though, as is the presence of regenerating fibers--I would go out on a limb and say you've had some sort of neuropathic process going on, though you're body is attempting to repair it--and repair can often come with it's own set of weird symptoms as the nerve fibers fight to reconnect (symptoms from a damaging process and from a repair process can often be eerily similar and hard to distinguish except in long-term retrospect, one of the many reasons a lot of us keep symptom diaries over long periods of time).

The problem with this testing is that it will not typically reveal a cause. What other testing have you had, and what other health issues are you experiencing?

Glen thank you for taking time to answer this I am extremly grateful, my symptoms are burning ,throbbing,electrical type pains with sensitivity to touch and temperature, it affects my face,hands,legs,feet, and trunk.
I have had every blood test imaginable, no diabetis vitamin deficiencies, I also have had an abdomen biopsy for amyloidosis(negative), I have recently had a lip biopsy done for Sjogrens(waiting on results), the skin biopsy was only done on one calf and afraid there are no numbers at all on the report which I was lucky to get, I see where you are coming from where do you "start". I also have autonomic issues going on problems with bladder,bowels,palpitations and have been getting dizzy spells(passed out once), I got some stress tests for autonomic nerve system done a couple of weeks ago waiting on those results as well. When I got my diagnosis small fibre sensory neuronopathy I asked my neuro why is it neuronopathy as opposed to neuropathy, his reply was between test results, symptoms and it started in my hands. I also have androgenetic alopecia, arthritis in my hands and a multi nodular goitre on thyroid which has been monitored
and there is nothing going on there, apart from that I'm healthy lol, thanks again for putting this into plain english I really appreciate. Keeping fingers crossed the hurricane will blow itself out soon............Marie