Dysautonomia: "The finger wrinkling test can be used as a screening test before tilt table testing"

[Dechi]

I just did the test and I have a score of 0 at 5, 15 and 30 minutes.

The temperature difference of the water, however, was 8 degrees at the end because I used a small container. I wonder if the results are valid, but I figure the difference at 15 minutes wasn’t more than 3-4 degrees so maybe it is valid.

 

[pattismith]

I just did the test and I have a score of 0 at 5, 15 and 30 minutes.

The temperature difference of the water, however, was 8 degrees at the end because I used a small container. I wonder if the results are valid, but I figure the difference at 15 minutes wasn’t more than 3-4 degrees so maybe it is valid.

I couldn't say, maybe you can try with a bigger container?

This test is much more than a screening for POTS: it' s a test for vascular sympathetic failure.
Most isolated autonomic failure are peripheral in nature (involving small nerve fibers), so if you have that, you may have SFN.

 

[Dechi]

I couldn't say, maybe you can try with a bigger container?

This test is much more than a screening for POTS: it' s a test for vascular sympathetic failure.
Most isolated autonomic failure are peripheral in nature (involving small nerve fibers), so if you have that, you may have SFN.

Thanks @pattismith. I’ll try again today. I tried to find litterature on line about it but couldn’t find anything. Do you have any links?

Is SFN « small fiber neuropathy » ? I’ve had the long table tilt test and it showed neurally mediated hypotension.

 

[pattismith]

@Dechi , I have already posted some resources in this thread:

Skin wrinkling for diagnosing small fibre neuropathy: comparison with epidermal nerve density and sympathetic skin response

1. H L Teoh1,
2. A Chow2,
3. E P Wilder-Smith2

Abstract
Objective: To compare simple tests of small nerve fibre function with intraepidermal nerve fibre density (IENFD) in the evaluation of small fibre neuropathy (SFN).

Methods: Patients with idiopathic SFN of the hands were prospectively studied. Evaluation involved clinical examination, nerve conduction studies, sympathetic skin response (SSR) and skin wrinkling stimulated by water and EMLA (eutectic mixture of local anaesthetics).

Results: Of 21 patients, 16 (76%) had low IENFD, 15 (71%) impaired water-induced wrinkling, 14 (67%) impaired EMLA-induced wrinkling, and nine (43%) abnormal SSR.

Conclusions: Stimulated skin wrinkling was nearly as sensitive as IENFD in diagnosing SFN, whereas SSR was of less use. Stimulated skin wrinkling is a useful supportive test when IENFD or other tests of small nerve fibre function are not available.

"Recent studies suggest that the finger wrinkling test evaluates the more distal portion of the autonomic nervous system [9, 10]. Teoh et al. [9] showed that the finger wrinkling test is a useful supportive test for diagnosing small fibre neuropathy. Wilder-Smith et al. [10] established that the finger wrinkling test can be used for predicting intraepidermal nerve fibre density. The correlation between the results of tilt table testing and finger wrinkling testing found in our pilot study suggests that in a significant fraction of patients both parts of the autonomic system are affected."

"A striking result of this pilot study is the differentiation between healthy subjects and patients by clinical scores at baseline. There are some explanations for this finding. There were three patients with wrinkled hands at baseline. All these patients had abnormal results on tilt table test. Maybe wrinkled hands predict the outcome of the tilt table test."

wikipedia:
"Small fiber peripheral neuropathy is a type of peripheral neuropathy that occurs from damage to the small unmyelinated peripheral nerve fibers. These fibers, categorized as C fibers and small Aδ fibers, are present in skin, peripheral nerves, and organs.[1] The role of these nerves is to innervate the skin (somatic fibers) and help control autonomic function (autonomic fibers)."

In this very informative article about SFN:


A - Tests for selective evaluation of somatic small fibers
Thermoregulatory sweat test
Quantitative sensory testing
Contact heat evoked potentials
B - Tests for selective evaluation of autonomic small fibers
Quantitative sudomotor axonal reflex testing
Skin wrinkling test
Sympathetic skin responses
Heart rate response to deep breathing and Valsalva test (cardiovagal function tests)
C - Tests for evaluation of somatic and/or autonomic small fibers
Skin biopsy
In vivo confocal microscopy


Causes of small fiber neuropathy.

Metabolic and/or nutritional
Diabetes mellitus, metabolic syndrome/glucose intolerance, insulin neuritis11,17
Chronic renal insufficiency18
Thiamine or B12 deficiency (myeloneuropathy spectrum)11,19
Hyper- or hypothyroidism11,20
Hyperlipidemia21
Infectious Leprosy22
HIV23, HTLV24
Hepatitis C25
Chagas disease26
Amyloidosis Systemic27
Familial (familial amyloid polyneuropathy)28
Autoimmune Celiac disease15
Sjögren's disease29
Inflammatory bowel disease13,14
Systemic lupus erythematosus30
Rheumatoid arthritis31
Sarcoidosis32
Guillain-Barré syndrome variants33
Drugs Extensive list, chronic metronidazole, statins, anti-TNF inhibitor, bortezomib11,34
Toxins Thallium, arsenic, alcohol35,36
Vaccinations37
Hereditary forms Hereditary sensory and autonomic neuropathy, Fabry disease, sodium channelopathies, Wilson's disease, Pompe disease, Fragile X-associated tremor/ataxia syndrome, Ehlers-Danlos syndrome Neurodegenerative Parkinson's disease, Amyotrophic lateral sclerosis 42,43
Cryptogenic

(Note: I think we can add Fibromyalgia in this list)

 

[Dechi]

@pattismith thank you. I had read the info you posted. I should have been more precise. I wonder if having no wrinkling of the skin can be a sign of other diseases besides SFN ? I just don’t think I dit the bill for it.

I wonder if any doctor would take this serious enough to conduct more investigation...

 

[pattismith]

@pattismith thank you. I had read the info you posted. I should have been more precise. I wonder if having no wrinkling of the skin can be a sign of other diseases besides SFN ? I just don’t think I dit the bill for it.

I wonder if any doctor would take this serious enough to conduct more investigation...

ok, do you mean you don't have any typical clinical SFN symptoms?
Most neurologists rely on sensory symptoms like tingling/burning/numbness in hands and feet. Did you experience something like that?

 

[Dechi]

ok, do you mean you don't have any typical clinical SFN symptoms?
Most neurologists rely on sensory symptoms like tingling/burning/numbness in hands and feet. Did you experience something like that?

Yes, I don’t have typical symptoms. No tingling, burning or numbness in hands and feet, or very rarely.

 

[Dechi]

I’ve done the test again this morning, this time in a bigger container. The température dropped less than 4 degrees instead of 2 but I think we can say it’s conclusive. Still no wrinkling at all after 30 minutes. Very strange.

 

[pattismith]

I’ve done the test again this morning, this time in a bigger container. The température dropped less than 4 degrees instead of 2 but I think we can say it’s conclusive. Still no wrinkling at all after 30 minutes. Very strange.

you can try to put one hand in the container, and you can add hot water regularly to maintain temperature.

if you don't wrinkle, it clearly shows that your autonomic nervous system is wrong, you have some kind of dysautonomia. Peripheral autonomic nerve fibers involvement is the more probable (SFN).

Finding the right neurologist to diagnose this problem and find the origin is another matter!

The best would be a high level neurologist specialist of dysautonomia (we need much more than a tilt table test !).
Website for Dysautonomia International can help you finding one.

The other problem is the reference test for SFN which is skin biopsy. Will your peripheral neuropathy show up with this test?
Given the fact you sometimes experience tingling/burning/numbness, your skin sensory small nerve are already involved and biopsy should be done.

My strategy is to find a reference centre for SNF diagnosis, and to insist on tingling/burning feelings, even if it's not what bother me most, just to have a biopsy done. because it's easier to have it done than to find a reliable autonomic neurologist to have a full autonomic system panel done (unfortunately).

Do you leave for a long time with your disease?

 

[Dechi]

My strategy is to find a reference centre for SNF diagnosis, and to insist on tingling/burning feelings, even if it's not what bother me most, just to have a biopsy done. because it's easier to have it done than to find a reliable autonomic neurologist to have a full autonomic system panel done (unfortunately).

Do you leave for a long time with your disease?

Thank you. I’m hoping for an appointment with the head of a dysautonomia department when this crisis is over. Hopefully he will agree to look into this.

Did you mean to ask how long I’ve had the illness ? If so, I started having symptoms 7 years ago but I’ve been disabled for 5.

 

[pattismith]

Thank you. I’m hoping for an appointment with the head of a dysautonomia department when this crisis is over. Hopefully he will agree to look into this.

Did you mean to ask how long I’ve had the illness ? If so, I started having symptoms 7 years ago but I’ve been disabled for 5.

yes! so sorry for my bad english, 35 years fighting this illness didn't helped my brain, I should make more control with Google translate!

I learn a lot during these 35 years, and even more this last year where typical SFN showed up.
(typical means skin sensory symptoms)
I learn that my illness is SFN from the very start, but that my skin nerves were affected very late in the course of the disease.
My glands, muscles, gut, stomach and vascular nerves were affected very long before, but I was not aware that it could be SFN.
My heart nerves were affected as well, but I didn't realize it until I felt skipped beats.

Now I am racing to find solutions before everything worsen too much (the heart is my first concern now).

I think my SFN is auto-immune and a close avatar of Sjogren or Lupus. So I take high level Lipoic acid + an immunomodulatory protocol used in these diseases. With the coronavirus crisis, I don't expect to have any appointement with a reference center before 12 months, so I don't have other choice...

 

[Dechi]

yes! so sorry for my bad english, 35 years fighting this illness didn't helped my brain, I should make more control with Google translate!

You English is very good, don’t worry !

Now I am racing to find solutions before everything worsen too much (the heart is my first concern now).

I hope you find something to help you. Life is not so easy right now but hopefully we we’ll get through it soon enough.

 

[Rufous McKinney]

Cant remember where I read this but I heard that wrinkling fingers is a nervous system reaction to hands getting wet that allows us to increase grip in these conditions. So it makes sense if you have some nervous system abnormalities it could show up in finger wrinkles.

This is so odd....I have not yet done the soaking experiment. My fingers ALREADY look like maximum wrinkles of the healthy controls with no soaking at all. My thumb prints will not trigger the DMV machine...my actual fingerprints are disappearing under these deep wrinkles.

So my finger tips normally look like the Healthy Control at 30 minutes. And wasn't there already research on using those wrinkles as a diagnositic? (another PR thread..contains my fingerprints)

I think that collagen has broken down, and fat stores are depleted. I don't have padding on my hands and feet....or fingertips. The fingertips are squashed when I type and stay that way for hours. Its much worse on my right side, the right side of my body being more sick than the left.

 

[Rufous McKinney]

The photographs are taken from left to right at t = 0, 5, 15 and 30 min.
a Patient with an abnormal result on finger wrinkling test. Score at clinical scale at t = 30 min is 1.
b Result of a healthy subject. Score at clinical scale at t = 30 min is 4

The photos of abnormal results...look largely like close to normal without presoaking, where as mine are covered in collapse, wrinkles and cross folds all the time.

My finger wrinkles do NOT look like: the 30 minute soaking healthy fingertips. Those look- soaked. (pruney).

Mine normally look..like chaotic wrinkles...they look quite different from the soaking result (which also get paler).

 

[pattismith]

You English is very good, don’t worry !


I hope you find something to help you. Life is not so easy right now but hopefully we we’ll get through it soon enough.

I am closer to a diagnosis than I never was, I won't give up now this fuckin corona won't stop me
If you want to investigate more the links between ME/CFS/Fibro/dysautonomia and SFN, please have a look at Dr Todd Levine and Dr Oaklander, best neurologists ever. (I posted some articles about them on PR)

@Rufous McKinney
It would be interesting to see if your wrinkles change after 30 mn in hot water?
Here what they say in the study about wrinkles fingers at baseline (did you had a tilt table test?):

"Recent studies suggest that the finger wrinkling test evaluates the more distal portion of the autonomic nervous system [9, 10]. Teoh et al. [9] showed that the finger wrinkling test is a useful supportive test for diagnosing small fibre neuropathy. Wilder-Smith et al. [10] established that the finger wrinkling test can be used for predicting intraepidermal nerve fibre density. The correlation between the results of tilt table testing and finger wrinkling testing found in our pilot study suggests that in a significant fraction of patients both parts of the autonomic system are affected."

"A striking result of this pilot study is the differentiation between healthy subjects and patients by clinical scores at baseline. There are some explanations for this finding.

There were three patients with wrinkled hands at baseline. All these patients had abnormal results on tilt table test. Maybe wrinkled hands predict the outcome of the tilt table test."

 

[Rufous McKinney]

Here what they say in the study about wrinkles fingers at baseline (did you had a tilt table test?):

I"ve not done a tilt table test yet...I should. I should do the home version....

Elsewhere in PR we were previously discussing the wrinkled all the time diagnostic, and that came from a research study..I should try to find that...above, it indicates Three patients had wrinkled at baseline.

Other odd symptoms- my right hand...the veins...dilate...swell up, it creeps up my arm when its bad. Half my hand is numb (most of the time). I stare at these weirded out veins...its a very odd feeling symptom...which subsides when I am less run down.

Its back, had a bad nite.

 

[Rufous McKinney]

If you want to investigate more the links between ME/CFS/Fibro/dysautonomia and SFN, please have a look at Dr Todd Levine and Dr Oaklander, best neurologists ever.

I'm having a lousy day today, while I felt pretty good yesterday, and did not over do yesterday at all.

Why do I only get one day of "feel ok".?????

And why was my IBS so bad last nite....???

I blame it on some food I ate...yet time and time again I suspect this is NOT ABOUT FOOD- its something neurological or mast cells...its maddening trying to determine the cause.

Someday I may visit the neurologist/ I seem to have a referral collecting dust. My husband's eye surgery has been corona-canceled.

 

[kangaSue]

Elsewhere in PR we were previously discussing the wrinkled all the time diagnostic, and that came from a research study..I should try to find that...above, it indicates Three patients had wrinkled at baseline.

The paper referenced in this thread mentions that three patients had wrinkled hands at baseline
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892617/;
[ A striking result of this pilot study is the differentiation between healthy subjects and patients by clinical scores at baseline. There are some explanations for this finding. There were three patients with wrinkled hands at baseline. All these patients had abnormal results on tilt table test. Maybe wrinkled hands predict the outcome of the tilt table test. Also the average age was significantly higher for patients with abnormal results on tilt table test than other patients and healthy subjects. ]

That's also the case for me too and I have idiopathic Autonomic Neuropathy. I don't have POTS and just had a delayed drop in bp during a TTT but interestingly, the TTT test also reproduced my gastroparesis symptoms similar to how it can in those with neuropathic POTS;
https://www.autonomicneuroscience.com/article/S1566-0702(18)30052-3/pdf
The gastrointestinal symptoms present in patients with postural tachycardia syndrome: A review of the literature and overview of treatment

 

[YippeeKi YOW !!]

Other odd symptoms- my right hand...the veins...dilate...swell up, it creeps up my arm when its bad. Half my hand is numb (most of the time). I stare at these weirded out veins...its a very odd feeling symptom...which subsides when I am less run down.

Its back, had a bad nite.

I actually came to this thread to see if it was something that might be helpful to you, remembering your posts regarding the severe fingertip wrinkling and actual loss of fingerprints, and here you are !!!

Glad you found this, but so sorry about the ropey veins thing, and the bad nite last night.

I've been lucky so far. The ropey veins stop more or less at my wrist or just a smidgeon above that, and , like you, are only really really bad when I've had a bad nite, or series of bad nights.

On the plus side, the wrinkling of my fingertips has gotten a little better ....

Damn. I just looked again and the left hand (I'm right-handed) veins have crept up slightly above my wrist, and we know it won't stop there.

Oh, fluck-all !!!! Always something with this twisty little thieving pickpocket of a mugger of an illness.

Now I'm getting depressed. Bugger bugger bugger !!!

 

[YippeeKi YOW !!]

As usual @pattismith , stellar graphics and really interesting observations, which is why you've been my hero since I first started reading these threads 18 mo's ago : !!!!

Thank you for this thread !!!