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Idiopathic Small Fiber Neuropathy
I'll try to keep this as short as possible. About 2.5 years ago I (35M) woke up one morning with tingling on my left side. Symptoms quickly spread and within a week or two I had numbness that moved around, cold/burning extremities, weird heart rate spikes, what felt like vibrations throughout my wholebody, and random other symptoms. Most of them would come and go but the tingling in my left leg has been consistent this entire time. After a month or two things settled and while the symptoms would still come and go overall they were steady. Some days were ok others not so much. As time passed I would say there was slight improvement just very slow for about a year. After things were fairly consistent overall despite the coming and going nature of most symptoms. About 6 months ago things started getting worse and numbness became consistent throughout my body instead of just flaring every so often. Recently, that has gone away and been replaced by numbness mostly in my lower leg/feet at night especially when something like clothing or a bed sheet touches it and that's where I'm at today.
Full disclosure I have been a weekend drinker for 10ish years. Never daily but over the course of 2-3 days I'd average about 15 drinks per week. Once this started I drank maybe twice in 6 months. After I started to drink again and it didn't seem to matter if I did for symptoms. I'd drink and feel great for a while after or not drink and feel awful with everything in between. 6 months ago when symptoms started to worsen the drinking did pick up a little more to maybe 3-4 days per week instead of 2-3. About a month ago I stopped again and things seem to have settled. I've asked 4 different doctors including 2 specialists about if drinking was the cause and they all said no and I'd need a lot more for alcohol to cause it and the presentation doesn't match typical alcoholic neuropathy. Plus I've never had any blood test show signs of liver damage. While that doesn't entirely rule it out it makes it less likely. Of course they all told me to cut back anyway because it does me no good to drink with nerve damage.
I've had a whole array of blood tests and genetic testing and the only thing that came back was one test of my B6 being triple the ref range but everything after came back normal. Vitamins, minerals, diabetes, autoimmune, inflammation, you name it. I know vitamin deficient is a common cause with drinkers but none of my tests were even close to low. I was on a multivitamin at the time so it's harder to gauge but I did get off it for a while and repeated tests and all were normal. I have had slightly high blood pressure for many years but not high enough to go on beds. Cholesterol bubbles between fine and barely above the ref range. Normal EMG and MRI of head and lumbar spine. Skin biopsy about a year ago confirmed small fiber neuropathy at my left calf site with the other 2 being normal.
I have no clue where to go from here. I've seen 2 neurologists at different hospitals including a neuromuscular specialist. Both have tried everything they can think of to no avail. I'll probably go back again soon since he did say to return if symptoms worsen which they have. But I'm truly at a loss on how to continue. All I can do is be as active as possible. The more active I am the better I feel so I try to run, hike, gym, etc as much as I can. No issues walking or anything like that yet so I'm fortunate.
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Hello @gooilers18, Welcome to Connect. We have all been there with no clue where to go next. That's what brought me to Connect back in 2016 after living with neuropathy numbness that started in my toes and eventually worked it's way into my legs after 20+ years. I finally saw a neurologist and was diagnosed with idiopathic small fiber PN and told the same thing all my primary care docs had told me over the years - no cure for neuropathy and nothing in their medication wheelhouse can help with the numbness. I shared my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
One thing you mentioned stands out a little to me is high Vitamin B6 levels which can cause neuropathy. There are other discussions and member comments on Vitamin B6 toxicity and neuropathy if you want to scan through the discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=vitamin%20b6%20neuropathy. You might also want to scan through related discussions and comments on idiopathic small fiber neuropathy - https://connect.mayoclinic.org/search/?search=idiopathic+small+fiber+neuropathy.
The best advice I can offer is to learn as much as you can about your condition and what treatments are available that might provide some relief. My two favorite sites for learning more are listed below.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Was it just one blood test that came back with a high level of B6 and following blood tests had normal B6 levels?
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2 ReactionsI can relate to your symptoms, though yours seems like it’s more severe than mine. I see a neurologist at Duke and was diagnosed with B12 deficiency. He absolutely did not want me to take B6, since too much can cause neuropathy symptoms. What do your neurologists say about very high B6 levels and neuropathy symptoms? I would be very curious about that.
I hope you find out what’s going on in your situation. Please share. My situation is improving. I am shocked and relieved. Good luck.
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3 ReactionsThe B6 was actually a test that I paid for myself and brought up with the doctors. The first one mentioned that if it was B6 symptoms should resolve in 6 months but that obviously didn’t happen. Second one didn’t seem concerned by it. I was aware that it caused neuropathy but this far down the line with all further B6 tests being well within range I have my doubts that’s what’s causing it with my symptoms worsening lately. I would off and on take a multivitamin that had about 30mg of B6 but it wasn’t a daily thing. I wasn’t even taking it when this all started but I did start after and 6ish months later got the high result back. Obviously stopped and didn’t take anything with B6 for a while and still keep amounts low today if I do take a supplement with B6.
I still take preworkouts but the ones I take do not have B6 on the label. Unless they still happen to have some and I’ve been inadvertently still consuming high amounts of B6 but I don’t see that as likely. The vitamin I take now has 1.9mg of B6 so nothing crazy.
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1 ReactionI’m no expert, but my doctor’s comments keep me away from any vitamin containing B6. If that is the culprit, perhaps it will take a while to resolve. And, if it isn’t….idk. I’m sort of like you. I also have Type 1 diabetes and post covid syndrome. They can also cause neuropathy. I think it’s B12 because when I started the mega supplement, I had significant response in my skin and limbs.
The positive EMG is interesting. Was the positive area more troubling to you than the negative areas?
My emg was normal but the skin biopsy was positive. The site was where I have constant tingling in my left leg so that’s not surprising. Upper leg was normal and I don’t have many issues there. Foot was also normal which was surprising but this was a year ago before the foot numbness became more common. It may be different now.
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2 ReactionsFor gooilers.
Plz note even increase in B6 vitamin level in blood would cause neuropathy. Pls stop taking Vitamin B6 supplements, as it falls to regular level, you should feel
better.
Dr Sunil Aggarwal PT
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1 ReactionI had no idea so many people were dealing with this. It's been 3 years for me. I just had EMG and muscle tests yesterday. That was 90 min of discomfort with no answer. Going for MRI.
Hearing new definition today. Small fiber nerves being the cause, but is there any relief?
Everyone has their own experience. It seems no two are exactly alike. Here's mine simplified: recent blood tests and EMG determine that mine is idiopathic. Because no cause or reason can be determined symptoms are treated(drugs). Fortunately, my symptoms are not very severe. I am trying to wean myself off gabapentin and celebrex. (Dr. supervised). All the best.
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