Thanks Deb.

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

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

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

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

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.

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

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]

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.