Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking " on fire ". My feet have similar issues. This is just one big Ick. Boo

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@joypalmer1

Has anyone found anything that helps with the tingling?

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I recently went through acupuncture therapy. 4 sessions (1 per week) were advised to give it a chance, and if after a break if 1-2 weeks, I felt it added value for me, perhaps get 2 more session. That’s it, not meant to be a lifelong therapy.
I’ve decided I’ll get the final 2 sessions. What it did for me is calm a lot of the angriness in my nerves. The numbness is still here, but less pain and tingling. I find my legs are more “relaxed” than they were, and some of the “walking on glass” on my feet feeling eased. No one thing on here works for everyone, and I’m slow at embracing new things, but am happy to say I gave Acupuncture a try and have found help from it.

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@lioness

@albeit I go along with John I've used vit-min all my life I also use a pain relief but it is homeopathic works well

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What is the pain relief you use? I also have SFPN.

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Has anyone had Sanexas treatments for Intercostal Neuraligia?

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@sjrohde1

Has anyone had Sanexas treatments for Intercostal Neuraligia?

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Welcome @sjrohde1, There is a discussion on Sanexas treatments where @duquer and others have shared their experience --- Does anybody have experience with SANEXAS for neuropathy?: https://connect.mayoclinic.org/comment/645606/

Have you looked into getting treatments with Sanexas?

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@johnbishop

Welcome @sjrohde1, There is a discussion on Sanexas treatments where @duquer and others have shared their experience --- Does anybody have experience with SANEXAS for neuropathy?: https://connect.mayoclinic.org/comment/645606/

Have you looked into getting treatments with Sanexas?

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Thank you. I gave read some of these posts. However, my husband has intercostal neuralgia in the upper chest and we wonder if anyone has been treated for this with Sanexas.

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My Dr seems to think I have that. I've had every test for heart, GI, chest xray, etc over the past 3 years. It's gotten worse this year. Went to pain Dr & he diagnosed it. Ordered me gabapentin, which after 2 weeks, it may have helped a little {doesn't hurt all day, every day} but also gives me weird dreams. He ordered physical therapy. Since I was already going for knee replacement PT, I told the order to them. My therapist said there really isn't much in therapy they can do, but gave me a few exercises to try at home. Again, only a couple of weeks. I can certainly feel the problem muscles when I do them. Don't know. I'm a little discouraged.

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I truly understand. I was diagnosed with pre-diabetes in 2004 and started noticing burning feet five years later. Even though my A1C has stayed below 5.7 all these years I still have noticed slow progression of SFN (confirmed by punch biopsy). I was a moderately heavy drinker but cut out alcohol 4 years ago. Apparently glycemic variability, triglycerides, BMI and hypertension are all strong factors in developing SFN. So I do my best to exercise and avoid inflammatory foods. I’m about to try IV Alpha Lipoic Acid, which has proven effective in reducing neuropathy pain. I’m also going to try Metanx, which has regenerated epidermal nerve fibers in not only lab rats but also humans. I will keep you posted.

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@lauraj155

@albiet, the hydrocortisone was prescribed by my PCP. I am fairly sensitive to meds so I started at 2.5 mg. twice a day due to getting insomnia from them. I gradually increased the dosage to 10 mg. and took it in the morning. I used a compounding pharmacy. It really helped turn things around for me where nothing else I tried made that much difference in managing the pain. But, I had to taper very, very slowly over a few months. I tried to taper once too quickly which didn’t work as the pain increased. The other side effects taking it long term which you probably know are high blood pressure, osteopenia. It was such a low dose that it did not cause any weight gain or puffiness. It also helped with increased energy as I was so tired from the pain drain! -Laura

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I’m concerned about steroids because they can greatly elevate blood glucose. And I am pre-diabetic.

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@ruthofanne

have you or anyone on the post had experience with Metanx?

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I plan to try it soon. There is some scientific evidence from human studies that Metanx improved epidermal nerve fiber density after six months.

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@jfouts1979

At work but sure - I have cryptogenic/idiopathic small fiber polyneuropathy (non-length-dependent) verified via skin punch biopsy. I have Cramp Fasciculation Syndrome and Erythromelalgia. I also have Grave's Disease (but post radioactive iodine treatment). I've had SFN for 11 years. 11 freaking burning years of pain. I feel like I am burning alive constantly. I've tried pretty much everything at this point in time. The only thing left is Ketamine. I'd like to try WST-057 by Win-San-Tor (which is essentially Pirenzepine in topical cream format at 4%) - but it is not available in the United States except via the FDA Expanded Drug Access Program. So if your doctor will fill out a form for you - you can get it - and it has been shown to reverse small fiber neuropathy. There is also ARA-290 which is called Cibenetide - a peptide that is injectable that has also been shown to reverse small fiber neuropathy. Araim Pharmaceuticals however was unable to secure the necessary FDA funding to bring that medication to market. Oh yeah - back to me - I have GERD, Ocular Rosacea, Fibromyalgia, and a few other things. Low Copper.....Low Ferritin....Low Vitamin D....despite supplementation. Gluten sensitivity - gluten free since 2015.

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When you say reverse SFN do you mean the treatments named regenerate nerve fibers?

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