How long does a skin punch biopsy for small fiber neuropathy take to return?

[Dmitri]

I had a skin punch biopsy done in May to test for small fiber neuropathy. I was told it would take 2-3 weeks for the results to return, but it has been almost two months. Did anyone else get this test done? How long did it take for the results to come back?

I tried calling the doctor's office multiple times but they don't seem to know if anything went wrong. I hope it wasn't done for nothing. The main symptoms that indicated for it are the burning pain throughout my body, especially in the hands and feet.

 

[Billt]

not sure how long but my son is waiting to have this done. His hands and feet burn and get very very red as well

 

[Rebeccare]

It took less than two weeks for me to get my results back. It sounds like this may be worth bugging your doctor's office again. Hopefully this is just a paperwork mix-up.

@Billt , I'm sorry that your son has such difficult symptoms. The good news is that the procedure is quick and easy--it stings a bit when they inject the lidocaine, but after that he won't feel a thing.

 

[Dmitri]

I ended up emailing the company directly today and they sent the report. The sweat gland nerves came back positive for neuropathy, but the skin samples is normal. This is a huge win for me, potentially opening way to better treatment, and plus it means that it will be harder for doctors to say that the pain is all in my head. Eat shit, psychobabblers.

 

[Dmitri]

not sure how long but my son is waiting to have this done. His hands and feet burn and get very very red as well

Was he diagnosed with erythromelalgia? It's a common co-morbidity with SFN. I don't have erythromelalgia, but I do experience Raynaud's phenomenon. When this all started, my whole body and mucosa were red, but I don't experience that anymore.

 

[Rebeccare]

it will be harder for doctors to say that the pain is all in my head

Yeah! Frame these and put them somewhere where you can see them! It's weird to say that it's a relief when a test finds something wrong with you but for patients like us it's so validating.

 

[Dmitri]

Yeah! Frame these and put them somewhere where you can see them! It's weird to say that it's a relief when a test finds something wrong with you but for patients like us it's so validating.

I almost felt like celebrating

After 20+ years of being in the dark, a positive test result is only good news.

 

[kangaSue]

I ended up emailing the company directly today and they sent the report. The sweat gland nerves came back positive for neuropathy, but the skin samples is normal. This is a huge win for me, potentially opening way to better treatment, and plus it means that it will be harder for doctors to say that the pain is all in my head. Eat shit, psychobabblers.[/ATTACH]

Any plans of where too from here?
Autonomic fibers are responsible for sweat gland function and also gastrointestinal organs, the urinary bladder and sexual organs along with cardiac output and regulation so would suggest that an autonomic function test panel should be on the cards now too?
At the very least, a QSART test needs to be done given that some studies have found that over 70% of those with painful feet from small fiber neuropathy have an abnormal result in a QSART test too (sudomotor dysfunction - sweat abnormalities).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/ (there's some pain med options in this paper)
https://neuropathycommons.org/neuropathy/neuropathy-overview

 

[ryan31337]

https://neuropathycommons.org/sites/default/files/Tests SFPN causes 11-07-17.pdf

That's what Dr Oaklander suggests for investigating treatable causes of SFN.

She considers patients with SFN & certain markers as having 'apparent autoimmune' mediated SFN. These markers include high ESR, positive ANA, low complement 3 & 4. She is seeing ~80% response rate from IVIG in these patients - with good response even if you've had the illness for decades.

 

[flitza]

https://neuropathycommons.org/sites/default/files/Tests SFPN causes 11-07-17.pdf

That's what Dr Oaklander suggests for investigating treatable causes of SFN.

She considers patients with SFN & certain markers as having 'apparent autoimmune' mediated SFN. These markers include high ESR, positive ANA, low complement 3 & 4. She is seeing ~80% response rate from IVIG in these patients - with good response even if you've had the illness for decades.

Excellent reference! Thank you.

 

[Dmitri]

Any plans of where too from here?
Autonomic fibers are responsible for sweat gland function and also gastrointestinal organs, the urinary bladder and sexual organs along with cardiac output and regulation so would suggest that an autonomic function test panel should be on the cards now too?
At the very least, a QSART test needs to be done given that some studies have found that over 70% of those with painful feet from small fiber neuropathy have an abnormal result in a QSART test too (sudomotor dysfunction - sweat abnormalities).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/ (there's some pain med options in this paper)
https://neuropathycommons.org/neuropathy/neuropathy-overview

Unfortunately, the autonomic lab I was sent to didn't have QSART, I clearly sweat excessively and hope that I can have this looked into somewhere else once I get to see the neurologist again. It had to try seeing five different neurologists before finding a competent one at Columbia. The previous ones either threw unhelpful pills at minor symptoms or accused me of being mentally ill.

The other tests such as the breathing function and a quick TTT came back negative. The most I get in terms of measurable orthostatic difference is a raise in blood pressure by 15-30 units when I'm in the middle of a flare. As it often happens, I felt pressure in my head as well as darkening vision and dizziness right as the table turned upwards, but BP and heartbeat didn't show anything. It says "moderate phase II decline" on the sympathetic valsalva test, but I don't know what that means.



Sometimes, autonomic dysfunction is divided into sympathetic and parasympathetic overload. Due to the wired, hyperaroused state of my body, I would presume that it's the sympathetic part that is in overdrive for me, if not both.

I mentioned before how pretty much all my symptoms feel as though they originate in my GI tract - when I get burning and throbbing in my gut, I feel the neuropathic burning pain in my hands and feet as well as a very unpleasant throbbing pain in what feels like the trigeminal nerve in my face.

 

[Insomniac]

Is it possible to have small fiber neuropathy without the burning sensation in hands and feet?
Is it possible to have SFN with just very painful feet?

 

[kangaSue]

Is it possible to have SFN with just very painful feet?

Yes. The feet are usually the first thing affected with SFN and it can stay confined to them.

 

[Dmitri]

Is it possible to have small fiber neuropathy without the burning sensation in hands and feet?
Is it possible to have SFN with just very painful feet?

The sensation can be just about anything - aching, throbbing, pins, temperature extremes or a total loss of sensation. Burning sensation is the the "textbook" symptom.

 

[kangaSue]

The sensation can be just about anything - aching, throbbing, pins, temperature extremes or a total loss of sensation. Burning sensation is the the "textbook" symptom.

Yes indeed and I should have said as much myself. The "classic text book symptoms" are often detrimental to the patient when it's taken literally by a treating doctor.

 

[Dmitri]

Yes indeed and I should have said as much myself. The "classic text book symptoms" are often detrimental to the patient when it's taken literally by a treating doctor.

My atypical autonomic symptoms were an example of this - periodic orthostatic hypertension rather than POTS, normal valsalva, etc.

Worse than narrowly defined symptoms is unconditional faith in standard blood tests and using negative results to rule something out, even diseases where the majority of patients may be seronegative, like Sjogren's.

 

[Gingergrrl]

@Dmitri Are you getting treatment now for SFN?

@Billt Has your son been tested yet?

@Forçe e Honra I wasn't sure if you have seen this thread in light of your recent biopsy for SFN?

 

[Dmitri]

@Gingergrrl Not yet, all I got so far was my first denial for IVIG. I hope it will eventually come through. Also hoping that the side effects won't be severe enough to stop it. I can't tolerate gabapentinoids and anti-depressants, the first line treatments for SFN.

 

[StarChild56]

I wasn't sure if you have seen this thread in light of your recent biopsy for SFN?

I have not, thank you for tagging me. I am not sure I'm up to reading much today but I will try/see.

 

[Gingergrrl]

@Gingergrrl Not yet, all I got so far was my first denial for IVIG.

This made me laugh b/c it reminded me of those t-shirts that say, "My parents went to Hawaii and all I got was this lousy t-shirt". We need ones that say, "All I got was my first IVIG denial..."

I can't tolerate gabapentinoids and anti-depressants, the first line treatments for SFN.

I had no idea that those were the first line of treatments for SFN and I would not be able to tolerate them either. I'm still hopeful that you will be approved for IVIG.