Small Fiber Neuropathy biopsy test results

Welcome @issapi04, The journey to get a diagnosis and a treatment that helps can be tiring to say the least. I don't think you are alone. There are many discussions and comments on autonomic neuropathy that you might want to scan through to learn what others have shared. You can find the discussions and comments using this search results link - https://connect.mayoclinic.org/search/discussions/?search=Autonomic+Neuropathy.

I think one of the best things you can do to help yourself is learn as much as you can about your condition and what treatments are available. You mentioned exposure to medications that are known for impacting the peripheral nerves. Are you still on the same medications?

I have been diagnosed with SFN and dysautonomia, and had a negative skin biopsy. I’m a patient at Mass General, which has a good neurology department. The neuromuscular specialist who ordered the test said that skin biopsies are good for confirming SFN, but not good at ruling it out: few false positives, but relatively many false negatives.

Only an expert could tell you the odds of having SFN given two negative test results, but it probably depends to some degree on who does the biopsy and who evaluates the sample. Mine was done by an expert (Anne Oaklander), but was sent to an outside lab for evaluation. In one of her talks, Oaklamder stressed the importance of having the biopsy evaluated by experts.

Hope that is at least a little helpful Best of luck

Hi Joanne; OMG! I had the same exact results after skin biopsy done at USF Tampa. Also only have symptoms in the feet and calves. I was just diagnosed with breast cancer and totally believe that my SFN symptoms were a result of the tumor. I would really love to chat. Please email me at msflea59@aol.com and we can connect by phone.

I have stabbing, lightning, stinging, burning pains in feet that are excruciating. The neuro said at last visit, after nerve function studies that I have chronic severe nerve damage ; polyradiculopathy in lumbar and c spine which causes horrendous spasms in legs and the right side of my back (last area ; lumbosacral area and feet since 11/2021.

In the summer of 2023 I started to develop spasms in the traps pain in shoulders (one has ripped rotator cuff).

The flare I’m in has newer symptoms. I’ve been having now lightning like pain to surface of skin in bottoms of feet and edges. The starting symptoms back in 2021 is now happening in both shoulders: hands and wrists…shoulder pain with tingling and pains and some numb feeling sensations to some fingers I had pain and light swelling the the outside wrists in similar time frame.

I take now after calling neuro on call who. Said it doesn’t sound like polyradiculopathy and she doubled my lyrica to 150 in am and 150 in pm and prescribed a strong muscle relaxer. The thing is I think it helped the spasm in feet but It caused the back pains I have to become more severe so I went back to the baclofen which I tolerate. ‘

The neuro at last visit said per the nerve study I didn’t have long fiber neuropathy and the only way to diagnose small fiber neuropathy was via a biopsy. I didn’t ask for a biopsy because I didn’t think there is treatment for it. She was going to do a spinal tap then decided not and put me on a ridiculously restrictive unsustainable anti inflammatory diet. I followed best ability for a month, beyond that sorry I need to eat chicken. I can’t live only on fish and eliminate all other meats and severely eliminate some food groups!

How coud a biopsy to find small fiber neuropathy help in treatments? What kind of treatments are offered to help pain?

Pain Mamet gave me shots in back it helped wanted to do ablation or epidural which neuro didn’t think woud be good for my balance which is really effected (use a cane). Im and can’t see a future with this kind of pain. Who does the biopsy? Is it the neuro? Someone else? All I can say is I’’m not sure the lyrica is doing much. Does small fiber neuropathy cause the pain that is close to the surface of the skin? I tried to massage foot and pain shot through the area. The nerve study also showed neuropathy in one forearm but not in legs (large fiber). This visit maybe she will want another nerve study I don’t know. I just know this is not a life. If this keeps up I’ll need a wheelchair to get around. Came close to it last week. So I’m waiting for doctors visits to help. Maybe someone can diagnose cause of my polyradiculopathy that is bilateral. Something new for a few months now is when I burn hands under hot water the sensation runs down body through back of legs and feet instantly. It stays until I can apply cool water. THat is just weird to me. Does anyone have that and know what it is?

Did your Neuro doc check for oncoming Parkinson's diease? My sister started having foot then leg pains, burning, freezing, and numb feelings.

Not that I am aware of. She tested for myasthenia gravis and stiff man syndrome which i thought might be silly since that is so rare but she did. Negative on the sms. Negative on mg. So, then she was to do a spinal tap and decided against it for a reason I am unaware of. But now that I have some information about me (the nerve conduction study results) I researched. So I know some questions to ask, but in the meantime I’m in a limbo and it’s really stupid at this point. Something should be glaringly obvious. Parkinson’s. Never would have crossed my mind. I don’t shake. I hurt. I don’t know what other deficits that disabling disease takes on. I know it can be a long road as are many disease processes. Mine, whatever it is, is moving right along in the “moving to other parts of the body” dept. I hope this does not do permanant preventable damage.