Small Fiber Neuropathy

Thanks, John. I tried posting a link in my previous message, but got virtually slapped upside the head. 😉

Last week I had a doctor tell me that an OGTT is only useful for diagnosing gestational diabetes, and that it would be a waste of time for diagnosing SFN. And yet the literature is replete with recommendations to perform IGT testing tin the face of idiopathic SFN. Yet another sign that our medical system has…issues.

(For better or worse, it’s pretty easy to do a OGTT at home. That said, converting from pinprick-based glucose levels to the similar but not identical venous levels, which the diagnostic criteria assume, isn’t straight-forward if you’re a borderline case.)

I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?

It will be interesting to here about your test results. I was diagnosed with small fiber neuropathy many years ago and the neurologist didn’t recommend anything. I have taken several different drugs but basically just lived with it.

@ridenhours44 I don’t really understand that your doctor didn’t recommend any treatment . What were the drugs that you’ve taken and did they help at all?
Can you explain more?

You know I can’t remember all of them. The last is gabapentin. I have a lot of things going on. My mouth burns all the time. My left ear rings. Both of my upper arms really hurt when I raise them and my legs hurt when I walk up steps. I have learned to live with all of this. My latest symptom is my face is pulling. Mostly at night.

@ridenhours44 Do you currently have a doctor that you trust? Someone who is aware of your bothersome symptoms and will help you manage them? You said you “just basically lived with it.” But you deserve so much more!
Do you ever think of getting a new doctor?

Hi, I do have small fiber neuropathy which was confirmed as a diagnosis through a punch biopsy. They took 2 samples of tissue from hip/upper thigh and calf. It showed under a microscope severe damage to my small fibers. At the time (2017), I was having painful burning in my feet, especially in warmer weather and when walking. I also had sensations of pins and needles and numbness if calves and feet. After many blood tests, they ruled out everything as a cause so classified it as idiopathic. My neurologist incidentally diagnosed my iron deficiency that was causing some of my symptoms. Some can have small fiber neuropathy from vitamin B12 deficiency or B6 toxicity (too much). I am not diabetic and do not drink alcohol so that isn’t my cause. It could be due to toxic exposures (air/water/food/supplements/medications, etc.). I take alpha Lipoic acid and Acetyl l carnititne and it really helps small fiber neuropathy. When it gets really bad, people will take Cymbalta aka Duloxetine which helps with nerve/chronic pain. Small fiber neuropathy can be painful and disrupt your sleep so learning what to do/not do will help you. Good luck!

Thank you so very much. I had blood tests yesterday and have biopsy soon and a test with needles soon. I have Sjogrens and Scleroderma and I just thought it was because of those. My fatigue is the hardest to manage and now leg weakness. I appreciate your reply. Thank you. Finding a good Neurologist has helped that is understanding !

I agree, Becky. It is important to have a doctor you trust but still can be difficult for patients. I do a lot of research on my own to narrow down my symptoms and potential causes and ways to diagnose/treat. Even my neurologist that I liked failed me in some ways. I got diagnosed with small fiber neuropathy but he kept forgetting and sent me for unnecessary test to “check for neuropathy” when I was already diagnosed (figured this out afterwards). He prescribed me amitriptyline and muscle relaxers but I couldn’t function on them and I am the one who researched Alpha Lipoic Acid and Acetyl l Canitine as supplements that help with small fiber neuropathy and told my neurologist (he never recommended them to me but seemed to validate he heard they were helpful when I told him I started to take them). He kept testing and testing me with EMGs for upper and lower extremities (seemed to like to test and diagnose but not necessarily treat). It took him a couple years before he referred me for treatment of chronic pain and never suggested Cymbalta/Duloxetine. My MRI of my cervical spine showed my spinal cord was being flattened but he never connected the dots (and other orthopedic doctors missed it, too) that I had cervical spondylitis myelopathy that was affecting my upper and lower extremities and ability to walk or control my bladder! Luckily I found a new spine surgeon who immediately diagnosed me and suggested ACDF surgery promptly to prevent permanent spinal cord injury and loss of bladder control (was only 52 at the time)! I had difficulty walking and using stairs plus kept dropping things and dizzy causing balance issues. We really need to be our best advocates because doctors are human and they make mistakes. They are not God (even though some think they are)! Run from doctors who don’t like answering your questions or are condescending and tell you to stop researching things online! Small fiber neuropathy can affect skin but can also affect your autonomic system which impacts organ function. It has a bigger impact than many realize and the most important thing to do is try to get to the bottom of what is causing small fiber neuropathy to treat it and prevent further nerve damage.

Hi, dancing1! I used to love to dance before my health decline and do miss it! 😔 I hear you about extreme fatigue! Make sure you have your doctor fully listening to your symptoms and not just look at the blood tests. Sometimes, tests cans come out “normal” but what is normal for some is not normal for you. My iron blood work showed normal but when my neurologist sent in for a more detailed iron panel, it showed deficiency! Same for thyroid. I spent thousands on very expensive blood tests that showed my body was attacking my thyroid gland (thyroid auto-antibodies aka Hashimoto’s thyroiditis) but my rheumatologist never said anything to me about it (my mother had Hashimoto’s and sister had thyroid cancer). The rheumatologist did multiple tests over 2 years and never referred me to an endocrinologist to monitor my thyroid. I went on my own when I wasn’t feeling better to have a thyroid nodule checked and it was suspicious so they recommended removal. That surgery and pathology proved Hashimoto’s and incidentally found a micro cancer and the nodule was affecting my ability to swallow/speak at times (it was over 2.5cm). Btw…I found my own nodule on a ct scan for cervical spine surgery when paying a bill! I happened to look at the pre-surgery work up and noticed the nodule on the report. Do you think any doctor saw this and raised this to me? No!!! Good luck with the blood tests and biopsy and advocating for yourself!