Peripheral Neuropathy and benign fasciculation syndrome.

Posted by sherryw @sherryw, Aug 5, 2019

My neurologist diagnosed me with small fiber peripheral neuropathy. He states i also have BFS (benign fasciculation syndrome.) My legs have weird sensations/zaps/pops, especially at night or when I am lying down. Do others have this problem?

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I keep searching for something that will ease the pain in my feet keeping me up until at least 4o'clock and sometimes later..things that used to help, seem to work less, as my condition gets worse. I read an article about Nerve Renew, which seems to help some people. has anyone tried this?

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@wideawakechas

I keep searching for something that will ease the pain in my feet keeping me up until at least 4o'clock and sometimes later..things that used to help, seem to work less, as my condition gets worse. I read an article about Nerve Renew, which seems to help some people. has anyone tried this?

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@wideawakechas - There is another discussion where Nerve Renew has been mentioned that you might want to read through -- Different OTC for neuropathy: https://connect.mayoclinic.org/discussion/different-otc-for-neuropathy/. You also might find the following list of Complementary and Alternative Treatments from the Foundation for Peripheral Neuropathy helpful. It contains a list of supplements known to help with neuropathy at the end of the document.
https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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If fasciculations have moved from lower leg to upper leg and torso, is my peripheral neuropathy worsening?

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@fue

If fasciculations have moved from lower leg to upper leg and torso, is my peripheral neuropathy worsening?

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Hello @fue and welcome to Mayo Clinic Connect. You ask a good question; one that I thought would be best addressed by members in an existing discussion on Peripheral Neuropathy and Benign Fasciculation Syndrome. You will notice that I have moved your post into this discussion so you can more easily connect with members like @swats005 and @rivermaya34 who have shared about fasciculations as well.

While we wait for members to join how long were you experiencing your symptoms in your lower leg before you noticed them in your upper leg and torso?

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@fue

If fasciculations have moved from lower leg to upper leg and torso, is my peripheral neuropathy worsening?

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Hi there @fue, greetings to you and welcome to the community! 🙂 Forgive me, as I am not familiar with your story... In my own case, I would say "it depends" in answer to your question. Sometimes the worsening symptoms are just due to being in a flare period, which will eventually subside over time. It also could be, though, that like you said the expansiveness is increasing. I try to self-monitor and take note of significant changes in symptoms and let my doctors know when I'm concerned. Do you have a regular neurologist that you see and trust already? ... I'm so sorry you are suffering, keep your head up, everyday is a fresh start! 🙂

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Thank you.
I have been discharged from Neuro. I do keep a diary and inform my GP when I see him but he doesn't really know what to do with me although he tries. I have been having eye or lip twitches for a year now off and on. I have had a globus when not stressed. I've had hollow sounds in my head from my ear. Nothing is ever done. I first went to GP 10 years ago with stone cold feet and I was told it was winter! I am very lucky, the pain has gone from feet and ankles, just starting in fingers and wrists. I wish we knew how bad it was going to get. My Neuro says it gets so far up legs then stops. I'm not sure I believe him after reading some of the horror stories.

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@amandajro

Hello @fue and welcome to Mayo Clinic Connect. You ask a good question; one that I thought would be best addressed by members in an existing discussion on Peripheral Neuropathy and Benign Fasciculation Syndrome. You will notice that I have moved your post into this discussion so you can more easily connect with members like @swats005 and @rivermaya34 who have shared about fasciculations as well.

While we wait for members to join how long were you experiencing your symptoms in your lower leg before you noticed them in your upper leg and torso?

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The numbness in balls of feet started approximately 10 years ago.

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YES, feet also..Neuropathy is painful at times, hands especially. What meds cover it? I try not to take anything I do not need to take.

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@fue

Thank you.
I have been discharged from Neuro. I do keep a diary and inform my GP when I see him but he doesn't really know what to do with me although he tries. I have been having eye or lip twitches for a year now off and on. I have had a globus when not stressed. I've had hollow sounds in my head from my ear. Nothing is ever done. I first went to GP 10 years ago with stone cold feet and I was told it was winter! I am very lucky, the pain has gone from feet and ankles, just starting in fingers and wrists. I wish we knew how bad it was going to get. My Neuro says it gets so far up legs then stops. I'm not sure I believe him after reading some of the horror stories.

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Acupuncture helped me the most but you need to find the right one. Community acupuncture is more cost effective.

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@cshallow

Acupuncture helped me the most but you need to find the right one. Community acupuncture is more cost effective.

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Thank you

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