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Small Fiber Neuropathy
Good morning,
I have been diagnosed with SFN, and was a bit alarmed at my biopsy results. I have read over a lot of the symptoms and discussions others posted, and did not want to be overly redundant, so in the interest of keeping this post marginally analytical, I was hoping you could give me an idea of the severity of the results.
The lab states that low density is in the range of 6.2-6.8 for the thigh. My observed density was 0.07. For the calf the low range was 4.8-5.4 and my observed was 0.67.
Those numbers seem extremely poor and depressing. Is it as bad as the numbers would seem?
Thanks for any thought you can provide
-Scott
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Hello Fred @goetf4997, you mentioned earlier that your pain and numbness is associated with spinal stenosis. I see that you mentioned you have tried Tylenol and Gabapentin but neither helped with the pain. Did your doctor have any other suggestions or treatment plans?
Also, have you tried getting your doctor to give you a referral for a Mayo Clinic appointment?
John
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1 ReactionHave your doctors talked about IVIG? I have widespread neuropathy symptoms, no sweating well below my waist, positive for short fiber, long fiber, motor and autonomic nerves but negative for lip biopsy and other common inflammatory and autoimmune tests. Started IVIG last month and it resolved about 40% of my symptoms with one infusion. IVIG doesn't work for everyone, but there are studies to see who additionally can benefit from IVIG treatments.
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2 ReactionsWii insurance cover it?
Please tell me where you read about neuropathy and bowel and bladder issues being related to nutrition? I have all of the above symptoms plus some and have had three stomach surgeries. I am convinced malabsorption is an issue, but as has been said, doctors are not trained in nutrition.
Thanks! Sita
I would very much appreciate journal articles stating this!
Fred
Can your primary do a Mayo referral?
Hi @sita, I'm not sure what article was mentioned but there are a lot of them out there. What started me on my journey to eating healthier was a book I found - The Wahls Protocol by Dr. Terry Wahls. She has MS and was able to get rid of most of her symptoms through cellular nutrition. You can read more about her here - https://terrywahls.com/about/about-terry-wahls/.
No other remedies for pain or treatment plans. Undergoing another MRI next week.
My PC chooses not to refer at this time. If the Neurosurgeon comes up without any solutions after MRI review I will ask him to refer.
Thanks for your help
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2 ReactionsYou can have your physician refer you to Mayo. There is a section on the Mayo website for that. I was able to refer myself to Mayo after 5 local surgeons missed the problem and wouldn't help me. I contacted them on the website, they called me and had me send in all the imaging (spine problem). A surgeon at Mayo reviewed the imaging and offered an appointment. The website also has a section to show what insurance they accept. I have heard it can be difficult to be seen there, but I got in. It was after 3 years of missed diagnoses, and that likely was a factor, and I had an issue that surgery could repair. You do need to go through proper channels and have them issue a patient number. I don't think walking in cold and waiting will work. Once you are a patient, you can wait for available appointments on a standby basis. You might try a neurologist outside of Mayo and see if they can refer you.
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1 ReactionI recently had a biopsy and my Neurologist said that I had short fiber neuropathy, but when I saw the results, my skin fiber nerve density was OK. However, my sweat gland density was low. I am not sure what this means. Does anyone know?
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