Peripheral Neuropathy and benign fasciculation syndrome.

I have had BFS for years on and off. Every time I get a flare up my feet hurt to stand or walk on them. Last EMG-NCV study I had showed Peripheral Neuropathy effecting my feet. It is mostly an achy/burning feeling. I have yet to determine the cause. B-12 was low and I am getting recheck on some others labs. The twitching and foot pain go hand in hand. The more I twitch the more my feet hurt. Anyone have the same issues?

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Welcome @dbchip, You will notice that we moved your post into an existing discussion on the same topic here - Peripheral Neuropathy and benign fasciculation syndrome.: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/. It might be helpful to click the above link which takes you to the beginning of the discussion where you read through the posts and learn what other members have shared.

You mentioned you've had the BFS on and off for years. Is it just recently that you have had the achy/burning feeling in the feet?

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I was diagnosed with bfs and cramp fasiculation syndrome in December 2019. Prior to my diagnosis I had a year of leg tingling/twitching , trigeminal neuralgia and started to have post micturation dribble and g/u dysfunction at the same time . The twitches progressed from my calf muscles and feet all the way up my torso, arms and face. Pretty much everywhere. They turned into hardcore zaps. I had occasional numb toes hands and genitals as well. Did all the neuro and emg. Positive fasics in 6 areas. No evidence of MND. Went to an ND and my tox screen came back with high levels of mercury and barium. I was a daily fish eater for a few years and this was my own logical conclusion from the start. Heavy metal toxicity. Also had Oxalates in urine. However, One session of IV chelation therapy and a month of high dose b supplements my body was set on fire. I was a mess. Now I have full blown neuropathic pain and paresthesias. Hands and feet went ice cold to hot red dependent on gravity. Twitching went through the roof. Lost sensation globally including part of my face that blew up in a painful then numb rash. Rashes all over. Mouth went numb as well. Fingers are now pruned all the time. Proprioception went to heck in my right leg. Many other symptoms as well. So after consulting with a neuropharmacologist/biochemist and my pcp I not only was mercury toxic but vitamin b overloaded as well. Anyone else have similar experience with BFS/CFS? I had a few autoimmune issues as well prior to the BFS. Just wondering if anyone recovered from this rare condition.

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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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i also have extensive fasciculations primarily focused in my arms but routinely felt in my legs as well. numbness and also muscle pain in my arms. I have severe stenosis and ddd in my c5/c6 as well. Curious where you had your surgery done and if it helped 100%. were your symptoms similar to mine? unfortunately most of the neuros ive spoken to have NOT suggested surgery due to potential risks of cervical spine surgery. ive had numerous clean EMGs to confirm its not ALS ot NMD. The last EMG was done at Mayo last week. im hoping the stenosis is source of my issue as well.

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i also have extensive fasciculations primarily focused in my arms but routinely felt in my legs as well. numbness and also muscle pain in my arms. I have severe stenosis and ddd in my c5/c6 as well. Curious where you had your surgery done and if it helped 100%. were your symptoms similar to mine? unfortunately most of the neuros ive spoken to have NOT suggested surgery due to potential risks of cervical spine surgery. ive had numerous clean EMGs to confirm its not ALS ot NMD. The last EMG was done at Mayo last week. im hoping the stenosis is source of my issue as well.

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@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/

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very interesting. i was just at mayo clinic a few weeks ago as ive been dealing with twitching, numbness and pain for months now. ive had several EMGs and no indication of ALS, but neuro at Mayo tested my pulse in numerous positions and believes there could be TOS. first i had heard of this possible diagnosis. i am seeing a vascular surgeon tomorow for additional tests to confirm.

Question, did you have any muscle twitching with your TOS? ive had twitching for months primarily focused in my arms

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