1. < Neuropathy

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Nov 12, 2021
In reply to @swats005 "I'm glad I found this thread. It was beginning to feel like I was the first..." + (show)
@swats005

I'm glad I found this thread. It was beginning to feel like I was the first person in the history of the world to have this combination of symptoms. I've seen 3 neurologists who just throw their hands up and save lets give it some time and see if it gets better. I was diagnosed with SFN a year ago after skin biopsy which was below the threshold at the hip only. My symptoms were only numbness in my hands and a tingling sensation in my ear, and some nerve pain in my toes. Then one month ago I developed widespread fasciculations in seemingly every muscle in my body, constantly sweaty hands and feet, dry mouth, muscles that fatigue very easily, cramps in hands and feet, lightheadedness when standing or being on my feet for an extended period, and a drastic progression of the numbness and tingling associated with the SFN in my arms and legs and face especially at night. I thought for sure I have ALS and I am still worried about it, but an EMG last week was normal. I have not heard of any link between SFN and Fasciculations until reading this thread. So far, we have not been able to find any cause for my SFN. My only flagged results in bloodwork are slightly low copper, slightly low C3 complement, and slightly elevated bilirubin.

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Hello @swats005, Welcome to Connect. You are not alone in your thinking about your different symptoms. I'm glad you found this discussion and hopefully some other members can share their experience with small fiber neuropathy and fasciculations. This is one of the sites that mentions a connection - "Motor nerve damage is most commonly associated with muscle weakness. Other symptoms include painful cramps, fasciculations (uncontrolled muscle twitching ..." -- Peripheral Neuropathy Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Here are a few other sites for learning more about neuropathy and it's causes that you might find helpful if you haven't already seen them.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Your list of symptoms looks pretty thorough and extensive. You also mentioned you've seen several neurologists with no real answers as to what the cause may be. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

REPLY
rivermaya34 | @rivermaya34 | Nov 12, 2021
In reply to @swats005 "I'm glad I found this thread. It was beginning to feel like I was the first..." + (show)
@swats005

I'm glad I found this thread. It was beginning to feel like I was the first person in the history of the world to have this combination of symptoms. I've seen 3 neurologists who just throw their hands up and save lets give it some time and see if it gets better. I was diagnosed with SFN a year ago after skin biopsy which was below the threshold at the hip only. My symptoms were only numbness in my hands and a tingling sensation in my ear, and some nerve pain in my toes. Then one month ago I developed widespread fasciculations in seemingly every muscle in my body, constantly sweaty hands and feet, dry mouth, muscles that fatigue very easily, cramps in hands and feet, lightheadedness when standing or being on my feet for an extended period, and a drastic progression of the numbness and tingling associated with the SFN in my arms and legs and face especially at night. I thought for sure I have ALS and I am still worried about it, but an EMG last week was normal. I have not heard of any link between SFN and Fasciculations until reading this thread. So far, we have not been able to find any cause for my SFN. My only flagged results in bloodwork are slightly low copper, slightly low C3 complement, and slightly elevated bilirubin.

Jump to this post

Hi @swats005, It's always bittersweet when someone new joins the group because it means another person suffering, but also it's one step closer to healing and also helping others. So, thank you for being here, the rest of us really appreciate your story. Know that you are not alone in your struggles, I just read your post and was checking all the boxes too. I can relate - my story is also long and complicated, so I'll spare you (I posted it recently), but - my SFN is genetic and linked to a mutation that leads to ALS-4 (phenotype). It sucks, but at least there are finally answers and a prognosis. The pain is crazy ... I'm so sorry you're dealing with all this. Praying you find answers and relief soon. We're all here to support you

REPLY
jgraber | @jgraber | Nov 13, 2021

You are not alone. I have SFN that has spread to my entire body, severe pain in sacrum, shooting down buttocks, burning and shooting from hips and down legs to feet, excruciating, deep aching pain in legs and feet that feels like it is in the muscles and bone, pain at the base of my skull shooting over my head and nerve pain to my teeth, severe pain from my forearms through my hands and feeling like my hands are on fire. Also, fatigue, leg weakness, etc. I’m also having severe hot flashes and night sweats that are not related to menopause. High doses of Lyrica and ibuprofen help. I’m also on low dose tramadol. These help but the symptoms and pain seem to break through. I’m working with a UC hospital pain specialist and I’m being referred to a rheumatologist and liver specialist due to a positive ANA and smooth muscle ab titer. All other blood work is normal except a minimally low WBC count. I’m interested in your Fasciculations diagnosis.

REPLY
bowerstx | @bowerstx | Nov 14, 2021
In reply to @swats005 "I'm glad I found this thread. It was beginning to feel like I was the first..." + (show)
@swats005

I'm glad I found this thread. It was beginning to feel like I was the first person in the history of the world to have this combination of symptoms. I've seen 3 neurologists who just throw their hands up and save lets give it some time and see if it gets better. I was diagnosed with SFN a year ago after skin biopsy which was below the threshold at the hip only. My symptoms were only numbness in my hands and a tingling sensation in my ear, and some nerve pain in my toes. Then one month ago I developed widespread fasciculations in seemingly every muscle in my body, constantly sweaty hands and feet, dry mouth, muscles that fatigue very easily, cramps in hands and feet, lightheadedness when standing or being on my feet for an extended period, and a drastic progression of the numbness and tingling associated with the SFN in my arms and legs and face especially at night. I thought for sure I have ALS and I am still worried about it, but an EMG last week was normal. I have not heard of any link between SFN and Fasciculations until reading this thread. So far, we have not been able to find any cause for my SFN. My only flagged results in bloodwork are slightly low copper, slightly low C3 complement, and slightly elevated bilirubin.

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Did you see this begin after getting Covid or the vaccine?

REPLY
flor2022 | @flor2022 | Feb 24, 2022
In reply to @sparkysparks "Oh yes sir, I stopped all vitamins and supplements with the exception of occasional zinc, selenium..." + (show)
@sparkysparks

Oh yes sir, I stopped all vitamins and supplements with the exception of occasional zinc, selenium and magnesium in the appropriate quantities. These naturally help chelate mercury. Honestly, I’m pretty sketchy of any supplements now. I had no idea how toxic certain fish are( big eye, yellow fin , albacore tuna). I was eating this food in hopes to help with my autoimmune problems (alopecia areata) I believed the fatty acids would help my immune system and keep my hair from falling out. It was an easy and convenient lunch to eat daily. Unbeknownst to me, certain fish are highly toxic if eaten more then 1-2 servings a week. That coupled with amalgam fillings that leave you with a steady blood level of mercury regardless of what you eat. I was on the paleo style diet, probiotics and such to heal my digestive system which put a heavy load of oxylates in my system (also known to cause neuropathy per my research). The megavitamin supplements just added fuel to the neuropathy fire. Then the whopper IV b6/EDTA. Synthetic b6 being known to cause neuropathy and edta known to cause numbness. I basically starved/fasted for months loosing 20 pounds and slowly reintroducing foods. It also appears I am b6 sensitive now. We as modern day humans do not need to supplement B6 if we have a well rounded diet and are healthy.

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Very intending to find this, about keto and oxylates. I am still awaiting diagnosis but have fasciculations galore, weakness, and SFN if not autonomic as well. Hm. Thank you

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 24, 2022
In reply to @flor2022 "Very intending to find this, about keto and oxylates. I am still awaiting diagnosis but have..." + (show)
@flor2022

Very intending to find this, about keto and oxylates. I am still awaiting diagnosis but have fasciculations galore, weakness, and SFN if not autonomic as well. Hm. Thank you

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Hello @flor2022, Welcome to Connect. I see from your first post that you have TS-HDS antibodies. There is a lot of good information to help you learn more about neuropathy and autoantibodies on the Neuropathy Commons website --- https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy

You mentioned you are still waiting for a diagnosis. Have you already met with a neurologiist?

REPLY
joannemm34293 | @joannemm30809 | Feb 26, 2022
In reply to @flor2022 "Very intending to find this, about keto and oxylates. I am still awaiting diagnosis but have..." + (show)
@flor2022

Very intending to find this, about keto and oxylates. I am still awaiting diagnosis but have fasciculations galore, weakness, and SFN if not autonomic as well. Hm. Thank you

Jump to this post

What about keto??

REPLY
1 reply
margaretob | @margaretob | Feb 26, 2022
In reply to @joannemm30809 "What about keto??" + (show)
@joannemm30809

What about keto??

Jump to this post

what is keto ????? never heard of it...

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 26, 2022
In reply to @margaretob "what is keto ????? never heard of it..." + (show)
@margaretob

what is keto ????? never heard of it...

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@margaretob and @joannemm30809 - Keto is basically a low carb high fat diet.

The Ketogenic Diet: A Detailed Beginner’s Guide to Keto: https://www.healthline.com/nutrition/ketogenic-diet-101

There's also a discussion on the topic if you want to learn what others have shared.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

REPLY
1 reply
joannemm34293 | @joannemm30809 | Feb 26, 2022
In reply to @johnbishop "@margaretob and @joannemm30809 - Keto is basically a low carb high fat diet. The Ketogenic Diet:..." + (show)
@johnbishop

@margaretob and @joannemm30809 - Keto is basically a low carb high fat diet.

The Ketogenic Diet: A Detailed Beginner’s Guide to Keto: https://www.healthline.com/nutrition/ketogenic-diet-101

There's also a discussion on the topic if you want to learn what others have shared.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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I understand keto. I am on keto for three years now. I was asking about keto because another person posted in their comments about keto as it relates to neuropathy etc.

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