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@sherryw

Thank you @lisalucier for your reply. Yes, I would like to meet @artscaping @rwinney @somisgirl and @barbbie I think it would be beneficial for all to connect and share information.

My neurologist is reluctant to do the skin biopsy because the results wouldn't change the treatment plan. I think it would be helpful to have the skin biopsy to verify the diagnosis and to have a baseline.

I am able to group the symptoms into two groups.

The benign fasciculation syndrome symptoms occur mostly as I drift off to sleep, Twitches/pops occur in different areas of my body, occasionally initiating movement. The BFS symptoms occur, less frequently, when I am idle, but never initiate movement. The episodes don't occur every night or every time I am idle. If I initiate movement, the symptoms stop.
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The small fiber neuropathy symptoms occur throughout the day and may wake me at night. One symptom is burning in my hands and feet. This happens, largely, when I have been using my hands to drive long distances or my feet to walk long periods. A second symptom is electric pulsations occurring on my arms, hands, lower abdomen (very rare,) legs, and feet. I may feel pulsating zaps of electricity down one finger or electric zaps that feel like a buzzing swarm of bees between my toes. (I am not sure how else to describe the sensation.) A third symptom is the feeling that I am walking on sand when walking on hard surfaces. This sensation may be contained to a small toe or cover the complete bottom of a foot. These events are not simultaneous. I haven't identified a variable that causes it to get worse or improve, except the gabapentin seems to decrease the frequency of occurrence, the longevity and the intensity.

I am open to any suggestions.

Thank you everyone!

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Replies to "Thank you @lisalucier for your reply. Yes, I would like to meet @artscaping @rwinney @somisgirl and..."

Hi Sherry – Many of your symptoms sound VERY much like mine. My hands are not problematic during the day, but when I'm sleeping it's a whole other story as I wake frequently with pins/needles sensations (no burning). The neurologist said that is likely due to the position of my hands when I sleep. It's so irritating I've thought of sleeping with braces on my wrists to see if it makes a difference.

Thanks to Gabapentin, I no longer wake up with burning feet, and in fact, my foot pain (which was fairly constant) has been eliminated. The one thing I still experience is the popping in my calves. I describe the sensation as being like popping corn (pop, pop, pop); thankfully it is NOT painful, just irritating. Like you – if I move my legs, the sensation stops. I do experience other sensations like electrical zaps – but they are infrequent and don't fuss me at all.

I've had the symptoms for a long time, but was only diagnosed a couple of months ago. I am satisfied with the treatment plan thus far.