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?

@jenniferhunter

@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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Again, me! I'm joining your club. Sleep with arm under pillow, wake with complete numbness down arm to fingers with.pund needles and tingles. Happens even when sleeping in recliner to control my position. Glad to hear you all discussing it. There's so much I want to discuss but honestly it feels like complain, complain, complain so I'm happy to jump in. Thanks again for reminding me I'm not alone in this crazy journey.

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@rwinney

Again, me! I'm joining your club. Sleep with arm under pillow, wake with complete numbness down arm to fingers with.pund needles and tingles. Happens even when sleeping in recliner to control my position. Glad to hear you all discussing it. There's so much I want to discuss but honestly it feels like complain, complain, complain so I'm happy to jump in. Thanks again for reminding me I'm not alone in this crazy journey.

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Hi, Rachel!

I don’t get a “complain” vibe from your posts. There’s comfort in community so I understand your desire to find others with similar challenges/symptoms. Furthermore, you provide so many tips and helpful advice. I know I personally benefit from reading all of your posts. Just my two cents. 🙂

Kia

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@klro0001

Hi, Rachel!

I don’t get a “complain” vibe from your posts. There’s comfort in community so I understand your desire to find others with similar challenges/symptoms. Furthermore, you provide so many tips and helpful advice. I know I personally benefit from reading all of your posts. Just my two cents. 🙂

Kia

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Kia,
You are the sweetest!
Thank you and I'm always hoping to help and inspire the way others do for me.
Rachel

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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, @cncwi17 – I can imagine finding nothing that helps with vibration feelings under your toes must be difficult. What other treatments in addition to the supplements you mentioned have you tried for your symptoms thus far?

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@johnbishop

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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It's caused by sitting in a car and the vibration of the car. I have to drive. My nerves are super ultra sensitive. I have to put a pillow on top and a pillow underneath my right foot if I'm not driving. It seems to works. It's very fustrating. Vibrations from the car makes my toes and under my right toes to vibrate and it's painful. It's fasciculations.

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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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@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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