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 Recently, that has gone away and been replaced by numbness mostly in my lower leg/feet at night especially when something like clothing or a bed sheet touches it and that's where I'm at today.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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You could ask your neurologist about Alpha-lipoiec acid---a natural supplement. My neurologist recommended it and I find it does reduce the symptoms. Maybe it will get even better from it? Not sure but I'll take it--better than some of the medical drugs I think as this helps enhance your bodies systems rather than ust numbing the pain. Good luck.