Small Fiber Neuropathy biopsy test results

Hi mlorena! The symptoms you mention here sound like what I have read happens when SFN effects the autonomic nerves as well as the sensory nerves in the skin. This can cause the Heart symptoms you are having, and the bladder and gastric problems too. I am so sorry you are going through this. It sounds like this has come on rather suddenly since you mentioned pursuing medical answers for 16 months now. How is your blood pressure? Do you ever feel faint when you stand up? POTS can be caused by SFN effecting the autonomic nerves. I think the symptoms you are having would make you feel tired! Has your neurologist run blood work that looks for inherited causes of neuropathy, and also for autoantibodies? It would probably be helpful to get that checked. I was having difficulty thinking clearly, and also struggled to remember names of items, it drove me crazy. Interestingly, I stopped eating wheat (again), and found that my energy improved, as did my foggy brain. I was surprised, but also happy to find a solution, at least for now...I do not have Celiac's as I had blood work done to see if I have the genetics for celiac's, and I do not, even though my daughter does. Celiac's can cause SFN too. It can all get so confusing as things seem to overlap, and it is so challenging to find a doctor who will work with you rather than not really connect, and leave you hanging. Oh, how is your thyroid? Have you had it checked? It can cause many of these symptoms, and sfn has been linked to thyroid disease too. I try not to worry about what is happening for me, I keep very physically active, and my symptoms have progressed, with new ones popping in. I have begun sweating on my torso, and arms recently when I get warm (Summertime), this has never happened to me like this before, and my skin on my torso is having nerve prickles, and itching, while my hands, feet, legs, arms have more and more nerve stuff going on. But the stiffness in my hands, feet, legs is worse and worse. I am negative for all rheumatology blood work. My PA (at the neurologist) told me that there is so much they do not understand or know re SFN! That it could possibly be causing my stiffness, in the meantime I tenaciously continue looking for answers...As we all are.

Hi Debbie! Yes, I had a nerve conduction test done first, by the first neurologist I saw, it was negative. He also checked me out for MS, which was also negative. Together we began to wonder if I might be dealing with SFN, so he referred me to another neuro who did the skin punch biopsy for me. I just did some reading about axonal neuropathy, you mention it is idopathic so I assume you went through testing for the different possible causes. I am always happy when the blood work returns negative because I would rather not have many of the things I have been tested for, and it can be a double edged sword too as not knowing what has caused this and why it is happening can be stressful. I am dealing with it better though as time goes by. You have similar symptoms? Do you have stiffness, especially in your hands and feet? This is really a big deal for me, and the first symptom I had, and it is getting worse. I was a clinical massage therapist, cranial sacral, and lymphatic drainage therapist for 25 years, and a potter, but I can do none of this now. Once the stiffness got my attention, the nerve symptoms began to develop. I am negative for all rheumatoid blood work. I would think they would want to know if you have SFN too as it is a different set of nerves that are being effected. I tend to want to understand every detail, and can feel quite frustrated with what I see as a lack of interest, and sometimes knowledge on the part of the doctors. I mentioned fibromyalgia to the neuro (trying to find answers for stiffness and soreness) and he told me it is caused by depression! I couldn't believe he was so far out of date, or that he was presenting the cliched male doc to female patient perspective of it is a mental problem. I told him he was working with old information! The neuro also wondered if I might have Reynaud's re my cold feet, but SFN can also cause this, so not sure what exactly the source problem is. Small fiber neuropathy can sometimes improve if the underlying causes are known, the small fibers can regrow. I read that IVIG infusions can possibly help axonal neuropathy, I believe if there is an autoimmune component then insurance is more likely to pay for it. I apologize if I am rambling, I'm excited to have people to discuss all of this with! The perspiring I am currently experiencing is new, not something I have ever dealt with before. I am not losing sensations, I am not having numbness, I am the opposite, my nerves are hypersensitive.

You sound like me, frustrated and anxious to find some answers so we can slow down this disease progression and live our best lives! The health care system works at an incredibly slow pace. I know there is urgency when dealing with a time-sensitive medical issue, like cancer or cardiac emergencies. But with SFN, I was given an appointment to see a specialist at UAB - in nine months! Nine months! In the meantime I’m just doing my own research, annoying and alienating my doctors, going from one therapy to the next, monitoring my symptoms (but which doctor am I to share this with?) I am trying to avoid the expense of going to a large research center. I went to Cleveland Clinic twice at the beginning of this saga, but I don’t think the expense was worth the 30 minutes with the doctor.

Many of the patients who were injured by the Covid vaccines are experiencing SFN and POTS. I mention this because you are searching for answers and your symptoms began 16 months ago when you may have been vaccinated. Most doctors are not knowledgeable about Covid vaccine injuries because the vaccine technology is so new and the research is still evolving. In addition, there is a lack of transparency about vaccine injuries. You can learn more by joining the Neuro V Long-Haulers Facebook group. I have stiffness in my ankles due to motor nerve damage caused by the Pfizer vaccine.

If Alpha lipoic acid helped some switch to
R lipoic acid read up on it as it is more available in blood also try Mega Benfototiamine. I get both products from Life Extension A very good company

Hi Robyn, I appreciate your sharing very much. I know for sure I don't have POTS. I have had a lot of bloodwork to rule out autoimmune diseases and heavy metals, I also had a genetics test and nothing. I had no symptoms of anything. The tests were negative except for the skin biopsy. The all over pin pricks were it. I have had palpitations since I was younger and they were not a big deal until now. I remember the day well when I woke up and I had a funny feeling in my chest. I thought my it was my palpitations acting up in a weird way. No symptoms but the funny feeling. So I made an appt. for my cardiologist. I had Echo and Stress Test and those were normal. But the holter monitor showed lots of stuff. I had lots of PSVC's, PVC's, couplets, bigeminy, trigeminy. I would like to get an appt. to Mayo but I don't think they will take me. Question: How hard was it for you to get into Mayo? I called and asked about getting an appt. and they told me I have to have a referral from a Dr. but that doesn't guarantee me an appt. It is somewhat mysterious so I wonder what comes next. I don't like taking the metoprolol but if it keeps my heart rate good I am okay with it for now. Thank you so much for your response. Keep in touch with us here. I wish you well also.

Pogo, I have never heard of R lipoic acid or the Mega Benfototiamine. I will read up on these. Thanks for the information!

pacer3702, I have been wondering about that. I did join that group. I took Moderna. I didn't think that at first. The reason I do wonder is because of how mine started. I woke up with full onset of pinpricks all over. It freaked me out. Being a nurse I had never heard of SNF. Had no idea what it was. I took care of pts with peripheral neuropathy but when this happened to me I didn't even think of that. When I asked the neurologist how many patients he had that happen to he said none. It was rare. I know that some Drs. believe and some don't. Proof will probably take years. I went to my GI Dr. appt and spoke with the ARNP and told her what has transpired with me since I saw her last. She said in the last two years since Covid a lot of people had a lot of gastro issues happen after the shots.

Hi eve38, I have read up on the autonomic nervous system. I woke up two days after retirement and had full onset of pin pricks all over including my eyes. Freaky!!! I was told it is rare. I had a genetic test and tons of blood work and all negative. I had the urinary issue, the gastro issue, the palpitations and whatever else before the SNF. Of course the tachycardia is new. But I am wondering if those things could be a precursor to it. I know I don't have POTS. My BP is good for one thing. So far knock wood I have not had any of those kinds of symptoms. My thyroid has always been good. I have had itching in different places that comes and goes. I told my dr. about it way before the SNF occurred but nothing came of it. I myself have been looking for answers also. I appreciate all the information from everyone. Networking is good. The thing about food and such is something else. My daughter has never had allergies or anything like that but has found that things like caffeine and fake sugar can cause her problems. It is amazing what things like that could cause.

@rnlorena I had a lot of those cardiac tests you mention also. It was the tilt table/autonomics testing my neurologist did that diagnosed the POTS. All the cardiac testing just concluded “tachycardia”, basically. I hear from so many people that it’s extremely difficult for them to get into Mayo. It was very simple for me. I wonder if it has to do with insurance. I just called, shared with them that I was looking for a second opinion and requested a specific doctor (based on my online research of the providers at Mayo). One thing worth mentioning is that my insurance does not require a referral. I can choose my specialists, as long as they are in network, without a referral. Maybe insurance is the difference? Which Mayo would you look to get into? I live in Phoenix and am very lucky that they’re practically in my backyard.