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?

@timsdeece

I'm not sure you definitely have fasciculations based on what you describe. Fasciculations are like a very localised muscle twitches. You'd definitely know if you had them. Here's a video of them happening on my leg:
https://youtu.be/8bcGn6T1uP0
I get them through my left leg and also on the right but less so.

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@timsdeece I had these contractions too, and they were being caused by spinal cord compression in my neck. My C5/C6 was ruptured and bone spurs were growing into my spinal cord and those got worse in time until there was no space left around my spinal cord. It was the compression causing them, and having spine surgery made it stop. At one point, i could bend my neck and send an electric bolt down my entire body. I was trying to get surgical help, but couldn't find that until I came to Mayo.

A twitch response is caused by an electrical impulse, and when it is repeating, the muscle twitches every time there is an impulse. When impulses get fast enough, the contraction is sustained as tetany which can be a muscle spasm. This is an experiment we did in high school advanced biology lab by shocking a classmates leg and turning up the speed of the impulses to find the speed at which the contraction became sustained. Compression of a nerve does cause twitches as it did for me. I responded to your other post with information about entrapment of the lumbar plexus as a possible cause. I had a similar video of muscles jumping in my leg that I recorded when my doctors hadn't figured out the connection with my symptoms and my spine problem. Muscle contraction also depends on chemistry that moves ions across the muscle cell membranes as it propigates the conduction of the electrical impulse along the muscle fiber.

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My name is Carol Selius and I have vibration feelings under my toes. Nothing seems to help. I am seeing a naturopathic doctor and I'm taking alot of supplements. I was diagnosed with candida and getting treatment for that. We both think it's due to a possible mutated gene. I also have tightness and numbness under my right toes and my left foot and ankle are numb.

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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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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.

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@cncwi17

My name is Carol Selius and I have vibration feelings under my toes. Nothing seems to help. I am seeing a naturopathic doctor and I'm taking alot of supplements. I was diagnosed with candida and getting treatment for that. We both think it's due to a possible mutated gene. I also have tightness and numbness under my right toes and my left foot and ankle are numb.

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Hi Carol @cncwi17, I see that you recently joined Connect and would like to welcome you. I'm wondering if the vibration feelings under your toes that you describe are muscle spasms or fasciculations. There is another discussion that you may find helpful.

> Groups > Neuropathy > Peripheral Neuropathy and benign fasciculation syndrome.
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/

You mentioned nothing seems to help with the vibration feelings under the toes. May I ask what you have tried?

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@iceblue

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.

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@iceblue, I have similar symptoms mostly with my left arm and hands when I sleep on my left side. I think it may have to do with a nerve being compressed or pinched when I'm sleeping on that side. I have learned to try and keep my left hand flat under the side of my pillow and that seems to help some. I have tried wrist braces that I purchased at WalMart and they seem to help as they keep most of the hand straight.

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That is exactly what the Neurologist said. My sleeping position is causing nerve compression.

Sometimes when I wake up, both of my hands are tingling. I think: What position were both hands in that they caused THIS? I sleep on my right side, and have always slept with my right hand under my pillow. To be honest, I can't imagine that sleeping with braces is going to be pleasant, but I'll give it a try.

Another possibility: I have an official diagnosis of arthritis in my neck. It bothered me horribly when I lived on the Coast, so I was referred to a Rheumatologist – who ordered x-rays. We now live in the Southern Interior where the climate is classified as semi-desert, and the only arthritis pain I have experienced over the past few years is in my hands (thumbs specifically). I know I could reduce that pain if I quit quilting – but my pain levels are not there yet. Thank Goodness because I love sewing/quilting!

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@iceblue

That is exactly what the Neurologist said. My sleeping position is causing nerve compression.

Sometimes when I wake up, both of my hands are tingling. I think: What position were both hands in that they caused THIS? I sleep on my right side, and have always slept with my right hand under my pillow. To be honest, I can't imagine that sleeping with braces is going to be pleasant, but I'll give it a try.

Another possibility: I have an official diagnosis of arthritis in my neck. It bothered me horribly when I lived on the Coast, so I was referred to a Rheumatologist – who ordered x-rays. We now live in the Southern Interior where the climate is classified as semi-desert, and the only arthritis pain I have experienced over the past few years is in my hands (thumbs specifically). I know I could reduce that pain if I quit quilting – but my pain levels are not there yet. Thank Goodness because I love sewing/quilting!

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@iceblue my doctor thought it was an issue with the ulnar nerve causing the tingling and pins and needles when sleeping on the side. I generally sleep the same position on either side and both sides after awhile will cause this tingling issue. The hand for the side I'm sleeping on is under the edge of the pillow as flat as I can make it. The other hand I try to keep it flat wherever it wants to go (changes when I fall asleep ☺). Here's more information on the ulnar nerve.

Ulnar Nerve Entrapment at the Elbow (Cubital Tunnel Syndrome)
https://orthoinfo.aaos.org/en/diseases–conditions/ulnar-nerve-entrapment-at-the-elbow-cubital-tunnel-syndrome/

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@iceblue

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.

Jump to this post

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Wow! Thank you for all of this information!!! It's a lot to process, but I will definitely take the time to explore this.

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@iceblue

Wow! Thank you for all of this information!!! It's a lot to process, but I will definitely take the time to explore this.

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@iceblue You are welcome!

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@johnbishop

@iceblue my doctor thought it was an issue with the ulnar nerve causing the tingling and pins and needles when sleeping on the side. I generally sleep the same position on either side and both sides after awhile will cause this tingling issue. The hand for the side I'm sleeping on is under the edge of the pillow as flat as I can make it. The other hand I try to keep it flat wherever it wants to go (changes when I fall asleep ☺). Here's more information on the ulnar nerve.

Ulnar Nerve Entrapment at the Elbow (Cubital Tunnel Syndrome)
https://orthoinfo.aaos.org/en/diseases–conditions/ulnar-nerve-entrapment-at-the-elbow-cubital-tunnel-syndrome/

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@johnbishop @iceblue The ulnar nerve is also affected by Thoracic Outlet Syndrome, and it's possible to have entrapment in multiple places. I sleep on my side too and would make my symptoms worse by bending my elbow. When I first noticed what turned out to be TOS, my entire arm was going numb when I slept or tingling and it was not the arm that I was laying on. The position of my neck also affected the numbness and tingling in my hand.

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@jenniferhunter

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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My goodness folks, this is so me! My PT was working on these areas and he really put a hurting on me. Unfortunately, insurance cut my PT visits off. So I wait for new year and Medicare. Hoping to get back on the MFR grind.

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