Skin biopsy results
 

I had mine sent to bako labs...here are the results.

right calf 4.10 fibers/mm ---- evolving sfn
left calf - 3.56 fibers/mm --mild sfn

scared..dont know the next steps.

Hi Panther,

Sorry to hear you're developing SFN. That said, at least you know what you're dealing with, which is not always the case for everyone. Also, your skin biopsy numbers are not that bad and suggest it's mild at this juncture.

Is it safe to assume a Neuromuscular Neurologist ordered the small skin biopsy? The next step is they should be advising treatment and looking for a cause. Has the doctor discussed the results with you yet?

All the best,

Cliffman :)

Never heard it described as "evolving" I dont like the way they make that sound.How do they know it's evolving after ONE biopsy?

I like that it says mild, that is supposedly what mine is although it's really painful at times. Get on the supplement regimen and change your diet until (or if) you get a diagnosis of a cause.

There are folks at this site who will walk you through the best options. You can see some of the supplements I take in my signature.

If you are prescribed drugs like Lyrica or gabapentin understand that they dont cure anything they just mask the symptoms. For some folks they dont even work at all. You can decide whether its worth it or not.

Not yet
 

What were your numbers. I think anything below 7 in distal leg biopsy is reduced numbers

What were your numbers. I think anything below 7 in distal leg biopsy is reduced numbers

Hi
 

Hi
My sugar levels are

89 in fasting 8 hrs

137 2 hr glucose tolerance

B 12 425 recently 534

B1 80





QUOTE=Patrick Winter;1190667]Never heard it described as "evolving" I dont like the way they make that sound.How do they know it's evolving after ONE biopsy?

I like that it says mild, that is supposedly what mine is although it's really painful at times. Get on the supplement regimen and change your diet until (or if) you get a diagnosis of a cause.

There are folks at this site who will walk you through the best options. You can see some of the supplements I take in my signature.

If you are prescribed drugs like Lyrica or gabapentin understand that they dont cure anything they just mask the symptoms. For some folks they dont even work at all. You can decide whether its worth it or not.[/QUOTE]

hi cliffman

No. What were ur numbers. How do you say it is mild? Will it get worse over time?




Sorry to hear you're developing SFN. That said, at least you know what you're dealing with, which is not always the case for everyone. Also, your skin biopsy numbers are not that bad and suggest it's mild at this juncture.

Is it safe to assume a Neuromuscular Neurologist ordered the small skin biopsy? The next step is they should be advising treatment and looking for a cause. Has the doctor discussed the results with you yet?

All the best,

Cliffman :)[/QUOTE]

here are the exact wordings
 

DIAGNOSIS: A. SKIN, RIGHT CALF, PUNCH BIOPSY: - INTRA-EPIDERMAL NERVE FIBER DENSITY IS MILDLY DECREASED (4.10 FIBERS/MM ). - PAPILLARY DERMAL NERVE FIBERS ATRETIC AND SLIGHTLY DIMINISHED. - SEE COMMENT. COMMENT: Immunohistochemical studies and morphometric analysis disclose a mildly diminished number of all small myelinated (A-delta) and unmyelinated (C) nerve fibers within the epidermis. In addition, fibers within the papillary dermis are atretic and are slightly decreased in number. The depressed number of fibers following immunohistochemical analysis using anti-PGP 9.5 antibodies is indicative of early-evolving small fiber neuropathy**. The published specificity below the fifth percentile, (less than 3.8 fibers/mm), is 97% (in the context of an appropriately fixated post-biopsy specimen). Reference: Ebenezer GJ, P Hauer, C Gibbons, et al. J Neuropathol Exp Neurol 66(12):1059-1073, 2007. **If this analysis appears discordant with this patient's clinical exam, verification of appropriate fixation (complete submersion in Zamboni's fixative, duration >10 hours but <36 hours, maintained refrigeration (without freezing), and appropriate anesthetic technique (infiltration around biopsy site, but not within it), would be indicated. Based on the epidermal nerve fiber density analysis in this case, one potential clinical course for this patient could include a dietary supplement containing Alpha-Lipoic Acid (≥600mg daily) and Benfotiamine (600mg daily). When clinically indicated, such products may be helpful to both diminish the symptoms of neuropathy, and to improve overall epidermal nerve health. Additionally, investigators have shown benefit to using combination therapy that includes L-methylfolate, methylcobalamin (B12) and pyridoxal 5’-phosphate (B6). References: Ziegler D. Effect of 4-year antioxidant treatment with alpha-lipoic acid in diabetic polyneuropathy: the NATHAN 1 trial. Diabetes 2007; 56(Suppl.1):A2. Luong KV, et al.. The impact of thiamine treatment in diabetes mellitus. J Clin Med Res 2012; 4(3):153-160. Walker M, et al.. Improvement of cutaneous sensitivity in diabetic peripheral neuropathy. Rev Neurol Dis 2010; 7(4):132-139.

B. SKIN, LEFT CALF, PUNCH BIOPSY: - INTRA-EPIDERMAL NERVE FIBER DENSITY IS MODERATELY DECREASED (3.56 FIBERS/MM ). - PAPILLARY DERMAL NERVE FIBERS ATRETIC AND DIMINISHED. - SEE COMMENT. COMMENT: Immunohistochemical studies and morphometric analysis disclose a moderate decreased in the number of small myelinated (A-delta) and unmyelinated (C) nerve fibers within the epidermis. In addition, fibers within the papillary dermis are atretic and diminished in number. The depressed number of fibers following immunohistochemical analysis using anti-PGP 9.5 antibodies is indicative of established small fiber neuropathy**. The published specificity below the fifth percentile, (less than 3.8 fibers/mm), is 97% (in the context of an appropriately fixated post-biopsy specimen). Reference: Ebenezer GJ, P Hauer, C Gibbons, et al. J Neuropathol Exp Neurol 66(12):1059-1073, 2007.




Based on the epidermal nerve fiber density analysis in this case, one potential clinical course for this patient could include a dietary supplement containing Alpha-Lipoic Acid (≥600mg daily) and Benfotiamine (600mg daily). When clinically indicated, such products may be helpful to both diminish the symptoms of neuropathy, and to improve overall epidermal nerve health. Additionally, investigators have shown benefit to using combination therapy that includes L-methylfolate, methylcobalamin (B12) and pyridoxal 5’-phosphate (B6). References: Ziegler D. Effect of 4-year antioxidant treatment with alpha-lipoic acid in diabetic polyneuropathy: the NATHAN 1 trial. Diabetes 2007; 56(Suppl.1):A2. Luong KV, et al.. The impact of thiamine treatment in diabetes mellitus. J Clin Med Res 2012; 4(3):153-160. Walker M, et al.. Improvement of cutaneous sensitivity in diabetic peripheral neuropathy. Rev Neurol Dis 2010; 7(4):132-139.







CLINICAL INFORMATION: A. Rule out neuropathy; right calf. B. Rule out neuropathy; left calf. GROSS DESCRIPTION: A. Received in Cryoprotectant is a 3-mm punch biopsy for further processing. B. Received in Cryoprotectant is a 3-mm punch biopsy for further processing. MICROSCOPIC DESCRIPTION: A. Representative fifty micron-thick frozen-tissue sections were taken for immunohistochemical analysis. Antibodies directed against PGP 9.5 demonstrate reactivity within surface epithelium to the degree listed above (a mild decrease in the number of intra-epidermal fibers). Scattered varicosities and axonal swellings are noted. Intra-dermal nerves appear slightly faint and diminished in number. Routine stains fail to demonstrate evidence of associated vasculitis or amyloid deposition. B. Representative fifty micron-thick frozen-tissue sections were taken for immunohistochemical analysis. Antibodies directed against PGP 9.5 demonstrate reactivity within surface epithelium to the degree listed above (moderate decrease in intra-epidermal fibers). Scattered varicosities and axonal swellings are noted. Intra-dermal nerves appear slightly faint and diminished in number. Routine stains fail to demonstrate evidence of associated vasculitis or amyloid deposition.

Welcome Panther
 

Mine was done through Therapath I don't think the numbers correlate. They have a different rating standard. It's a little confusing how they do it. Seems like where yours was done is a little more clear and easier for the layman to understand.

hi
 

Thanks for the reply Panther. I am hoping for the best at this point. Let me see how the next few months pan out. Uncertainty is the thing that makes me scared.

Thanks Deb.

How has it been with managing pain after seeing the pain mgmt dr. any more symptoms?

Panther
 

Sadly mine has progressed pretty rapidly. It started in my feet when I could barely walk a month after chemo ended. I had NO idea what was going on. My PCP immediately stated neuropathy due to the pre-diabetes and chemo. It's now in my hands, arms and legs. Sometimes in my teeth/gums and jaw.

I have not used any of the supplements that are suggested for neuropathy but I may start. They may be very useful for you.

Currently for the pain mgmt of SFN I'm on the following:

1,800 mgs gabapentin that I divide into 3 times a day

20 mcg/hr BuTrans pain patch that I change every 7 days

10-325 oxycodone-acetaminophen that I can take up to 3 times a day and I usually have to use 3 a day

I did confirm that the gabapentin was working when I had to go off of it for 6 weeks when trying another drug. 1,800 mg a day is my max. If I go any higher I start hearing muffled music and voices :eek:

Others on here told me I would get use to some of the pain in time but I didn't believe them.....lol....of course they were correct ! You get to the point where you can overlook some of it which is a blessing in itself.

The people here on our NT community are very caring, supportive and full of great information.

Are you taking any medication for this right now ?

Debi

It is scary to have uncertainty. Just make sure you see a neuro who now starts looking into ALL the possible causes. There can literally be more than 20 causes.

With your numbers it sounds like you will be able to survive but you must be willing to fight through some serious pain spells. Its gonna happen and you just have to fight through it. You will have days where you feel pretty decent as well. it will likely be most painful at night when COrtisol levels are low.

Most importantly, pay attention to triggers. For most people stress, sugar, wheat, certain foods and extreme temperatures will set things off.

I would make sure to go with 3 supplements to start. Acetyl L-Carnitine, Benfotiamine and R-Lipoic Acid. They have helped me the most. If you find yourself tired a lot get some sublingual Methyl b12. Take it every morning on an empty stomach.

For those that do heal, it takes years. For me, am I healing? I am not sure. I don't think I am worsening though. Mine really flared up like crazy summer of 2014. I got off all meds and went for supplements and dietary change. I am not active as much as I wish i could be becuase of the SFN which is the hard part for me. My SFN is worst at the bottoms of my feet, so that makes excessive walking or running difficult.

Hey there Patrick :)
 

Hi Debi - I tried to private message you but I am in Georgia and am looking for a new doctor (mine retired after 10 years of being with her), I am very fearful of the pill mills you mentioned. I know we aren't allowed to share Dr. names on here .....is there a way for you to share yours with me privately? I am a new member so I may not have all the bells and whistles of this site figured out yet! Thank you! - Bulldawg95

can my numbers start to deteriorate from here? technically my right calf is above the 95 th percentile. as the lab has specified might be early and evolving

panther

The original standards--
 

--for intraepidermal small nerve fiber density were originally set by researchers at Johns Hopkinsback in the 80's by comparing symptomatic people with "normal" controls; the numbers for mean, median and range of nerve fibers per cubic centimeter of hairy skin were tabulated and, in my opinion, the 5th and 95th percentiles from this large, but not huge, sample were rather arbitrarily designated as representing definite small fiber neuropathy. (See: "McArthur protocols".)

As I've written about here quite often, though, since people don't generally get skin biopsies performed unless they symptomatic, it's hard to determine what their asymptomatic normal actually is or was. One can go get a skin biopsy and be in the twentieth percentile and be considered "normal" but would have no way of knowing if before symptoms they were in the fiftieth percentile and this represented a dimunition of small fibers.

Fortunately, skin biopsies are easily reproducable over time, and sometimes the pattern over time--figures moving up or down or staying relatively stable--is a better indication of progression or recovery. The way we confirmed my impression that I was beginning to get function back and was healing at least somewhat was when my numbers over two years moved from the third percentile to the seventeenth. But who knows where I started before all this hit in 2003.

glen

How do my numbers look?

I read a scary article about supplement production and am looking for a trustworthy source. are suggestion s permitted here? Thanks!

They don't know if it is evolving or progressive. SFN is something they either can or can't find a cause for. If they find a cause, it can be treatable or stopped. If they can't, the only treatment is pain meds and watching and waiting. The biopsy tells that their is damage. I don't see how they would be able to tell there is ongoing damage unless under the microscope they saw the "thing" causing the damage in which case they would have a cause.
I am reliving the desperation and sadness I felt when my first neuromuscular dr gave me my diagnosis in a miserable hopeless way. Don't give up hope.