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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@joekurtz

My neurologist dx'd me with PN. I have numbness in both feet and ankles. In my hands up to my wrists I have a feeling of sand esp. in my fingers. My feet and hands are always cold. This began @ i year ago. The dx. is a bit confusing because I also have cervical and lumbar stenosis. Lumbar laminotomy and cervical fusion did help the low back pain and upper extremity paresthesia.
I find gabapentin helped a little but I was overly sedated by it. I have mild balance and do not want to fall.
I feel better with Pickle Ball and yoga as my exercises.

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Hi @joekurtz, Welcome to Connect. Thank you for sharing your diagnosis and what helps. There is another discussion on balance that you might find helpful here:

> Groups > Healthy Living > Having trouble keeping your balance?
-- https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

I have small fiber PN that affects mostly my feet and lower legs. I don't have any pain with my PN but do have the numbness symptom. Do you have pain along with your numbness?

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Yes, they interfered with last night’s rest. What did he tell you to do to alleviate the symptoms?

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My arms will go to sleep during the night - I don't imagine that's a correct name for the numbness and tingling. It really is pointless for me to go to sleep in a certain position because I move around to any number of positions while sleeping. I'd have to be put in restraints, which I was during one of my hospital stays.

Jim

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@jimhd

My arms will go to sleep during the night - I don't imagine that's a correct name for the numbness and tingling. It really is pointless for me to go to sleep in a certain position because I move around to any number of positions while sleeping. I'd have to be put in restraints, which I was during one of my hospital stays.

Jim

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@jimhd You may want to look at the prior page in this discussion where I talked about thoracic outlet syndrome. My first symptom was my arms going to sleep (numb) while I was sleeping on my side, and for me it was the arm on top that I was not laying on. For me the position of my neck, if it is bent forward can also bring on the symptoms. Physical therapy can help.

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@jenniferhunter

@jimhd You may want to look at the prior page in this discussion where I talked about thoracic outlet syndrome. My first symptom was my arms going to sleep (numb) while I was sleeping on my side, and for me it was the arm on top that I was not laying on. For me the position of my neck, if it is bent forward can also bring on the symptoms. Physical therapy can help.

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@jenniferhunter I did read your post. Limbs going numb and tingly has happened all my life. It always goes away quite soon.

Jim

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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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@sparkysparks

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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Hello @sparkysparks, Welcome to Mayo Clinic Connect. There is some evidence that vitamin b6 toxicity can cause neuropathy since the body handles it different than the other b vitamins. You might want to join in the following discussions to see if some of the posts might answer your questions.

- Benign Cramp Fasciculation Syndrome: https://connect.mayoclinic.org/discussion/benign-cramp-fasciculation-syndrome/
- Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/
- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

I'm assuming you stopped taking supplement with b vitamins. Have you had labs done to check the levels of b6 in your blood?

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@sparkysparks

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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@sparkysparks I thought the same thing as John, B6. My wife, who has PN, has always taken b vitamins religiously, but about 2 months ago she finally quit as every b complex pill she took had some B6 in it. Her PN seemed to flare a lot when she took them and now she believes that has calmed down, no more flares from the B's.

I must say you sure had me doing a lot of internet searching for all the stuff you mention, much of which were new words to me. So it sounds like the heavy metals in your system have caused the neuropathy and possibly all of the muscle twitch/pain issues? Do you think the chelation therapy dealt with the metals effectively? Are there side effects to the chelation drugs themselves that you might be suffering from? A cursory look at an article about them makes it sound like you can get really messed up with improper use of them or administering the wrong ones. Did they question your reaction as to whether it was from the B vitamins or the chelating drugs?

I hope you find someone here in the forum who can give you their firsthand experiences with BFS/CFS. It's always a bummer to have a condition that is so rare as you have a hard time finding help/support from others with your illness. One thing I am learning more and more is how many different things can cause neuropathy. I am beginning to appreciate just how lucky I have been to never get it myself.

I wish you well. Best, Hank

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@sparkysparks

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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@sparkysparks Hi there, I read all you wrote, and my heart goes out to you. I don't even know what to say, as you have so much going on. I think I would just be repeating what Hank said to you, but he can say it so much better than I could ever say it. I just want you to know, that I am here, feeling your anguish. My best, and all the prayers I can muster. Lori Renee

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@sparkysparks

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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Dear sparkysparks, wow, I am stunned reading your post and what you've gone through and are going through. My heart is heavy; I can't stand what you've suffered and are suffereing!!!!!!!!!!!! I recently began eating salmon and tilapia. First it was mostly tilapia but now mostly salmon, fresh caught wild Alaskan King. Three times a week I've eaten fish. May I ask what fish you were eating and how many times per week? I always weigh mine and know it's 4 ounces. Since my already severe osteoporosis has worsened significantly (daily steroids but before daily mega doses), I've added more vitamin D3 to my diet than is in my multi-vit/mineral and my bone strength medication. How much D were you taking? I can't believe the chelation therapy caused you so much grief! I am so very sorry to hear this! I too have a ton of diseases and full blown SFPN from head to toe w/ organ dysfunction as well. Paresthesias, you name it. Raynaud's disease, oh my fingers hurt something awful! I have to wear exam gloves (give me more dexterity but keep fingers a little warmer than not) but still keep them in a rolled up heating pad every opportunity I have. I have no idea if recovery happens for anyone but I know God can heal when and if it's His will and that either way, He has a purpose in all things. I stand on this biblical truth since knowing Him so intimately and trusting Him in all my circumstances. I will uphold you in prayer and ask that you not only get relief but healing and ZERO pain! Warmest wishes, Sunnyflower

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