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Non-Length Dependent Small Fiber Neuropathy
there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.
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Small Fiber Neuropathy (Non-length Dependent)
Diagnosed through symptoms and skin biopsies. Not sure how far along I am based on what I call my episodes/ attacks. Maybe someone has an idea. Initially, I'd awake in the night with my scalp, face, neck, shoulders, back, chest, abdomen, and thighs, all burning, itching, prickly feeling and shocks. My skin would be red and feel like goose bumps on my abdomen. It drives me crazy. I use Neutrogena gel cream which is cooling and also, cold compresses from the freezer. The neurologist prescribed Gabapentin, but I don't take it. I want to know the cause and not just treat the symptoms. Had the SCN9A gene checked - negative. He ordered a number of blood tests, of which my ANA results were positive. It is not the first time that it has been positive. However, the rheumatologist wasn't concerned since I didn't have symptoms of the various autoimmune diseases. I also have POTS since Covid last year. Wore a heart monitor for a month - no issues. My attacks also happen during showers, coming in out of the cold, or just being cold. They are happening more and more during the daytime, not always my entire body and out of the blue. I am now seeing an osteopathic, functional medicine doctor. We work together on getting to the autoimmune cause. Still testing the gut, since I've had a number of ongoing issues there. Since October, I've logged 58 episodes. They last anywhere from 15 to 30 min., one lasting an hour. I don't log facial tingling by itself or getting zapped in the leg or side. Sometimes, it can occur off and on for most of the day (a couple of times). I've developed ongoing heel pain on one foot. Just the other evening, every step I took it felt like I was getting zapped in the other foot. Fun times! So, my question is ... is this an early stage and can I expect things to get worse. Hoping to treat the cause soon and head it off at the pass, regenerating the nerves.
Appreciate any comments.
Marilyn
Hi @mogden52 (PricklyPear), welcome.
I moved your post to this existing discussion:
- Non-Length Dependent Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/non-length-dependent-neuropathy/
I did this so you can read previous posts and connect easily with other members like @kathleen123 @ncameron @sf2021 @gator66 @exitframeleft @johnmacc @trudi22 @rnlorena @jemock @danye1 and more who have experience with Small Fiber Neuropathy (Non-length Dependent). Given that you are in the early stages, they may be able to offer thoughts about progression, although, as you know, everyone is different.
You mention that you are working on getting to the root cause and are currently exploring autoimmune causes. Have you been diagnosed or are living with an autoimmune condition?
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1 ReactionColleen, thank you for moving me to the appropriate discussion. I will read the previous posts and articles.
Still trying to find the cause but my doctor thinks it is autoimmune due to my ANA readings.
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1 Reaction@rnlorena It has been a bit since I posted. I have some questions. I have small nerve fiber idiopathic non length dependent. I need answers to some questions. After I had the pin pricks in my eyes I went to my eye doctor who use to be a neurologist. I asked him questions about the pricks. He said he was no longer a neurologist but an ophthalmologist. So a couple of visits ago he asked me to get my neuro records so I did. My last visit he finally said something about my eyes. He told me that he would not use a needle to numb me when I need to get my cataracts done. He would put me to sleep. He said because I have neuralgia he wouldn't use a needle. So my ortho doctor wants me to try an injection in my back. I brought that up about small nerve fiber and injections. He just listened and that was it. So should people with small nerve fiber have back injections? I cannot get answers. Also I had tingling from my right wrist all in the hand and I didn't do anything to cause it. It went away after a few minutes. The next time it happened it wasn't as noticeable but I put my hand on my husbands hand and asked if he felt my tingling and he said yes. Also has anyone every had pinpricks (paresthesia) in their mouth? I had one that shot across sideways in the back of my mouth. Also has anyone had burning in your throat? I did. It came on then went away.
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1 ReactionVery little saliva. Your teeth start rotting.
I can’t begin to tell you how many times I have said that I can’t live like this. And yet I keep on living like this. All that you can do is try to make it through that moment to the next. That’s how you keep on living like this. My sustains me as I know this is not the end or how things will be permanently.
This all sounds very familiar. I’ve been dealing with it for over a decade and symptoms just keep adding to the list. I truly wish you the best at getting to the cause. The stats say that The cause is not determined 60% of the time. That’s why it’s called idiopathic
Thank you. Knowing each person is different and may have different underlying causes ... how long before your symptoms got worse and/ or you had additional symptoms.
I sure hope my doctor figures out what is causing my NLD SFN and soon.
Marilyn
Hello, What is that please plain, thank you.
Hello Kathleen, What is that please, I have Small Fiber Neuropathy, made worse after hip surgery!