Benign Cramp Fasciculation Syndrome

Posted by StephanieT @slturley, May 27, 2020

Hello, has anyone here been living with the struggles of Cramp Fasciculation Syndrome? I was just diagnosed last week after months of horrible cramping. Can anyone tell me what has worked for you? I am interested in connecting with other people who are suffering with this.
Thanks in advance.

Hello. First time poster long time viewer. Question for anyone who'd like to chime in. I've been dealing with muscle fasiculations for over a year now. My calfs are pretty constant. I also have some exercise intolerance and fatigue. I've seen two neurologist and have done two EMGs within the past year which were both normal. They both said I was suffering from benign fasiculations. I did a bunch of blood work as well. Was Considering coming to Mayo for a third opinion. Was wondering if anyone could chime in. As I was worried about mnds and I know normal EMGs and ncs point away from those.

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@jhn48110

Hello. First time poster long time viewer. Question for anyone who'd like to chime in. I've been dealing with muscle fasiculations for over a year now. My calfs are pretty constant. I also have some exercise intolerance and fatigue. I've seen two neurologist and have done two EMGs within the past year which were both normal. They both said I was suffering from benign fasiculations. I did a bunch of blood work as well. Was Considering coming to Mayo for a third opinion. Was wondering if anyone could chime in. As I was worried about mnds and I know normal EMGs and ncs point away from those.

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Hello @jhn48110 and welcome to Mayo Clinic Connect, although you joined some time ago but officially just posted today for the first time.

You will notice that I have moved your post into an existing discussion on the same topic so you can connect with other members like @birdbeep and @wendycad who have both commented recently and who may be able to share their experience with you as you look toward what you feel is next in your healthcare journey.

That said, you did mention you are considering Mayo Clinic for a third opinion so did want to share that you may use this link if interested in pursuing an appointment: http://mayocl.in/1mtmR63

Based on the appointments you've had with the other neurologists and the results/feedback they've shared, are you thinking this is something else or that there is more going on?

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@amandajro

Hello @jhn48110 and welcome to Mayo Clinic Connect, although you joined some time ago but officially just posted today for the first time.

You will notice that I have moved your post into an existing discussion on the same topic so you can connect with other members like @birdbeep and @wendycad who have both commented recently and who may be able to share their experience with you as you look toward what you feel is next in your healthcare journey.

That said, you did mention you are considering Mayo Clinic for a third opinion so did want to share that you may use this link if interested in pursuing an appointment: http://mayocl.in/1mtmR63

Based on the appointments you've had with the other neurologists and the results/feedback they've shared, are you thinking this is something else or that there is more going on?

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This isn't the same topic. I don't have cramp fasiculation syndrome as I do not cramp…..but I would appreciate others opinions

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@jhn48110

Hello. First time poster long time viewer. Question for anyone who'd like to chime in. I've been dealing with muscle fasiculations for over a year now. My calfs are pretty constant. I also have some exercise intolerance and fatigue. I've seen two neurologist and have done two EMGs within the past year which were both normal. They both said I was suffering from benign fasiculations. I did a bunch of blood work as well. Was Considering coming to Mayo for a third opinion. Was wondering if anyone could chime in. As I was worried about mnds and I know normal EMGs and ncs point away from those.

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could possibly be small fiber neuropathy which is not determinable by EMG, only a skin biopsy. My SFN started with calf fasciculations and burning toes but I think there could be numerous causes.

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@helennicola

could possibly be small fiber neuropathy which is not determinable by EMG, only a skin biopsy. My SFN started with calf fasciculations and burning toes but I think there could be numerous causes.

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@helennicola would the EMG show if the fasiculations were from something bad?

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@jhn48110

@helennicola would the EMG show if the fasiculations were from something bad?

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I think the EMGs just determine large fiber nerve impairment, you would probably have to see a neurologist for a determination of cause and possibly lab work.

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@helennicola

I think the EMGs just determine large fiber nerve impairment, you would probably have to see a neurologist for a determination of cause and possibly lab work.

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I've done a lot of lab work and had two EMGs and everything was normal.

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@jhn48110

This isn't the same topic. I don't have cramp fasiculation syndrome as I do not cramp…..but I would appreciate others opinions

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Hello @jhn48110, I might be mistaken but I think CFS and BFS are a similar condition only the cramp fasciculation syndrome is a more severe form with the cramping. There is another discussion which is probably better for you if you want to check it out.

Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

Here are some reference articles you might find helpful if you have not already seen them.
— Benign fasciculation syndrome: What causes muscle fasciculations?: https://www.medicalnewstoday.com/articles/320388
— Excerpt from article below – "My diagnosis changed from benign fasciculation syndrome (BFS) to cramp … I do not have amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS) and …" – Living Each Day to the Fullest – GBS/CIDP Foundation: https://www.gbs-cidp.org/patient-stories/living-each-day-to-the-fullest/

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@jhn48110

I've done a lot of lab work and had two EMGs and everything was normal.

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Have you had a punch test skin biopsy done? That can determine small fiber neuropathy but not the cause. Helen

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