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Small Fiber Neuropathy

Neuropathy | Last Active: Oct 3, 2023 | Replies (213)

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@becsbuddy

@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?

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Replies to "@ridenhours44 Do you currently have a doctor that you trust? Someone who is aware of your..."

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.