Peripheral Neuropathy and benign fasciculation syndrome.

Posted by sherryw @sherryw, Mon, Aug 5 2:16pm

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?

Yes, I also have small fiber PN, and have the "pops" you describe, which I believe are muscle twitches (or fasiculations).

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Hello @sherryw, Welcome to Connect. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where other members are discussing benign muscular fasciculation.

> Groups > Brain & Nervous System > Benign Muscular Fasciculation
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

Have you been prescribed any medications as treatment? Here are some links I found that may be helpful.

NIH – A prospective study of benign fasciculation syndrome and anxiety.
https://www.ncbi.nlm.nih.gov/pubmed/30028521

NIH – Another Perspective on Fasciculations: When is it not Caused by the Classic form of Amyotrophic Lateral Sclerosis or Progressive Spinal Atrophy?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192433/

PatientsLikeMe.com – Benign fasciculation syndrome
https://www.patientslikeme.com/conditions/benign-fasciculation-syndrome

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@jeffrapp

Yes, I also have small fiber PN, and have the "pops" you describe, which I believe are muscle twitches (or fasiculations).

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Thank you @jeffrapp for your response and @johnbishop for yours. I also have numbness, burning, electric shocks on my legs, toes and fingers. I am being treated with gabapentin and monthly vitamin b12 injections. I am reviewing supplements with caution. I appreciate any help. I will check the links provided by @johnbishop PN is challenging.

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@jeffrapp and @sherryw — There is also another neuropathy discussion you may be interested in joining and learning what other members have shared that helps them.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I shared my neuropathy story and what helps me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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Hi, @sherryw, and welcome to Connect. Since we are a ways into the discussions in this thread, I thought I'd invite some of the Connect members who have talked about benign muscular fasciculation into this conversation here, like @captainanxiety8 @jenniferhunter @lizaa @lorirenee1 @didi09. They may have some comments on whether they have been diagnosed with small fiber peripheral neuropathy, as well, and also tell you if they have experienced their legs having weird sensations/zaps/pops, especially at night or when lying down.

How have you felt the gabapentin and monthly vitamin b12 injections have worked for you thus far, sherryw?

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Hello @lisalucier thank you for the welcome! I appreciate the supportive community. My symptoms developed rapidly in May. The symptoms are worse if I miss a dose of Gabapentin. My neurologist is titrating the dosage up slowly. My Vit B12 level did reach normal limits with treatment. My testing besides the vit B12 Level is thus far normal. My neurologist is leaning toward the SFN being idiopathic. The diagnosis of SNF is based on normal testing (including a normal EMG and NCS) and symptoms, A skin biopsy has not been done. I appreciate any assistance. Thank you!

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@sherryw

Hello @lisalucier thank you for the welcome! I appreciate the supportive community. My symptoms developed rapidly in May. The symptoms are worse if I miss a dose of Gabapentin. My neurologist is titrating the dosage up slowly. My Vit B12 level did reach normal limits with treatment. My testing besides the vit B12 Level is thus far normal. My neurologist is leaning toward the SFN being idiopathic. The diagnosis of SNF is based on normal testing (including a normal EMG and NCS) and symptoms, A skin biopsy has not been done. I appreciate any assistance. Thank you!

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Thanks for the additional information, @sherryw. Good to hear that you are seeing some symptom improvement with the Vit. B12 treatment and gabapentin.

I'd also love for you to meet and @artscaping @rwinney @somisgirl @barbbie.

You mentioned that no biopsy has been done. Are you hoping to have this in the future? Are you able to clearly differentiate what symptoms are from the small fiber neuropathy (SFN) and what is from the benign fasciculation syndrome?

Liked by sherryw

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@lisalucier

Thanks for the additional information, @sherryw. Good to hear that you are seeing some symptom improvement with the Vit. B12 treatment and gabapentin.

I'd also love for you to meet and @artscaping @rwinney @somisgirl @barbbie.

You mentioned that no biopsy has been done. Are you hoping to have this in the future? Are you able to clearly differentiate what symptoms are from the small fiber neuropathy (SFN) and what is from the benign fasciculation syndrome?

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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, I'm Rachel…
Girl, it is definitely time for a skin biopsy! I say this not only because you have such definitive symptoms but also to ease your mind and narrow diagnosis down. The biopsy is a simple procedure and well worth the peace of mind , in my opinion, regardless of outcome. Please keep us posted and feel free to ask any questions you have.

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Also, B12 deficiency (which is my underlying cause) is more than enough to be responsible for Small Fiber Neuropathy symptoms. I believe even once your levels are regulated, the damage may already be done. I receive b12 injections every 2 weeks and have been since February when I was first diagnosed with SFN. Just recently my methylmelonic levels (deeper dive into b12) have normalized. I will meet with a gastro Dr next week to attain a better understanding of why the deficiency occurred and what to do moving forward. There are hereditary issues surrounding b12 deficiency and it's important to me to have knowledge for my children's sake as well. Good luck and I hope your neurologist is open to communication with you.

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