Neuropathy symptoms come and go - is this typical?

Hi @kmst1994, I have no medical training but from what I've read symptoms of neuropathy can happen quickly or grow slowly over time. They can also come and go, or get better or worse, at certain times. Depending on what caused your peripheral neuropathy, your symptoms may get better over time, or they may be lifelong. Mine came on slowly and got worse over 20 years but the progression has slowed or stopped the past 2 years, can't really tell from the symptoms. This probably explains it much better than I can...

"Does small fiber neuropathy come and go?
Most people with small fiber neuropathy experience a slow progression, with symptoms moving up the body from the feet. A diagnosis of small fiber neuropathy doesn't mean you'll be diagnosed with large fiber neuropathy later on. Neuropathic pain can worsen over time. In other cases, it goes away on its own."
--- What Is Small Fiber Neuropathy?: https://www.healthline.com/health/small-fiber-neuropathy

I would make a list of questions you have and write them down to take along with you to your upcoming appointment with your neurologist. Also, I would learn as much as you can about your condition and what treatment options are available since there really is no cure.

Hi @kmst1994
I also have SFPN, diagnosed with a skin biopsy.
I agree with everything John says above, and have had all the experiences mentioned, including waxing and waning of symptoms.
Regarding the skin biopsy, I understand your interest in getting the test. My neurologist was not particularly interested, because I had typical symptoms and other test results, so that the diagnosis was obvious, without the skin test. Perhaps your neurologist has the same opinion.
I insisted, got the test and the anticipated result, with no change in treatment, prognosis, etc. In other words, the test was of no practical value, but it did satisfy my "need to know".
Regarding your neurologist, you state "even if he does this or not". Are you referring to his opinion about whether to recommend the test, or whether he actually does the test? The test is simple (obtaining a small skin sample) but expensive, because it has to be sent away to one of only a small number of centers that interpret the sample. and

@jeffrapp
I think I need to “know” what I am living with as there has been lots of testing with no real answers. Right now the most likely culprit is either SFN or non celiac gluten sensitivity and it would help me to just know. The neurologist dismissed my thorough written history @johnbishop and I have hope, with no expectation, that he is more willing to listen this visit.

Hi, I’m wondering if you have had an EMG or Nerve Conduction Study? I met with a new Neurologist yesterday. It seemed to me I had SFN written all over me and wondered why we wouldn’t do skin biopsies to confirm (I have “need to know” like someone else commented) But this Neurologist explained that my EMGs have indicated long fiber axonal loss PN with no demyelination, and that is the diagnosis; hence no need to further look to see if it’s SFN. I’m still absorbing this, as I’m in awe I’ve found this compassionate Neurologist who actually took time to spell something out for me! He even drew me a little diagram. So I’m just wondering if you’ve had an EMG with results. I am not positive what results people get from an EMG when they have SFN, if any.

Hi Debbie @dbeshears1, When I started on my neuropathy journey to learn as much as my old mind can handle on my condition, I found some videos that were easy to understand from Matthew B. Jensen, Assistant Professor of Neurology, University of Wisconsin. He has a YouTube channel which is just what I needed at the time. Check it out 🙂- https://www.youtube.com/c/MatthewBJensen/videos. The first one I watched was a good walkthrough about how different conditions are diagnosed --- Approach to neurological syndromes: https://youtu.be/3FrQ7Glvgok.

Perfect John - this is so overwhelming and you know you’ve seen it before but can’t seem to find it. But you always know where things are! You must have been an IT person or a librarian in your former life!

Damage to the larger of the small nerve fibers can be detected on an EMG. That is how my sensory (small-fiber) peripheral neuropathy was diagnosed. I also have motor (large fiber) nerve damage. The cause was an adverse reaction to the Covid vaccines.

@kmst1994
I see your point. You are in the difficult position of not actually having a diagnosis, so it can be helpful to simply know what is happening. Also, I agree that it is frustrating to have your physician reject your "thorough written history". It would be helpful to know whether you wrote that history, or if it was from another practitioner. Also, as another poster asked, did you have an EMG? In typical SFN, the EMG is negative.
In my case, I had a negative EMG, blood tests were negative, and I had typical symptoms, so the diagnosis was made, and then confirmed with the skin biopsy.

My neuropathy was diagnosed 50 years ago (Agent Orange). Wide spacing between 'attacks' until age 60 when it became continuous. Typical progression, right foot and leg, up that side and down the other. Sometimes can't use eating utensils to get food to my mouth. My neurologist is surprised that I am not in a wheel chair. His famous quote: 'don't worry, it is not a fatal disease, you just don't live as long as everyone else.' Meaning I am losing nerves and thus muscle and will fall at the wrong time. Keep up the balance training!

I am new to this forum. This post verified that peripheral neuropathy could go away on its own.

I have idiopathic PN. Mine started in 1999. I am now 71 years old. My PN is idiopathic, not diabetic or genetic. Every specialist said I would never get feeling back in my feet and legs. Both legs were numb from my toes and gradually worked up to above my knees. Now I have horrible pain in my shins. While progressing, I had zapping pain, stabbing pain, and finally numbness.

My neurologist dismissed me. She said I did not have PN and there was nothing she could do for me. Luckily, I have a pain doctor who treats my arthritis pain. He is going to do a nerve conduction test. My hope is for some answers.