1. < Brain & Nervous System

Benign fasciculation syndrome (BFS)

Posted by captainanxiety8 @captainanxiety8, Mar 10, 2019

Not sure if this is the right place to ask this, but I'm really not sure how to interpret what's going on. I'm 40, have had random twitches now and then around my body for a few years and ignored them. Mentioned it to my Doctor last year during my annual routine health check and she said it's likely just stress and ignore it. Got sick a month ago, high fever, headache, dizziness, chills, and near constant twitching in different spots all over my body. My knees were going crazy and my biceps were twitching, I felt like my body was malfunctioning. I was also itching all over and my extremities were aching, especially in my feet and hands, but when I pressed or touched my feet or hands, there was no pain spot.

Two weeks after I got referred to a Neurologist who checked my strength, did not do any EMG or MRI, no other tests, just testing if I could physically push back or feel anything below my knees and past my elbows. He laughed and said I have benign muscular fasciculation syndrome and gave me some Xanax. I went for a second opinion and got the same diagnosis, benign muscular fasciculation, and was asked to return after a few months to check on me. The twitching is not as constant as before, but it's still happening, arms, lower and upper legs, knees, neck, shoulder, chest, they last a few seconds and stop. I can't sleep, the itching and the twitching wakes me up at night. The twitching does not go away when I move the muscle, it keeps twitching. Has anyone else ever had anything like this? If so, how or did it resolve?

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carlakay72 | @carlakay72 | May 25, 2022
In reply to @johnbishop "Welcome @carlakay72, I'm sorry to hear the neurologist referred you back to your PCP. I think..." + (show)
@johnbishop

Welcome @carlakay72, I'm sorry to hear the neurologist referred you back to your PCP. I think I might also look for another neurologist if I was in the same situation. Have you thought about seeking help or a second opinion at a teaching hospital or major health facility?

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Hello, no, I haven't thought of that, but it's an excellent idea. Thank you!

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carlakay72 | @carlakay72 | May 25, 2022
In reply to @windyshores "I started having twitching in my right eyelid a few weeks ago, which spread to the..." + (show)
@windyshores

I started having twitching in my right eyelid a few weeks ago, which spread to the cheek, and then my right arm and hand, and the arm also has a sort of rolling vibration every once in awhile, and sometimes goes numb. I have had facial numbness on the left side for about a year but nothing on the right until recently. The right arm also has nerve pain as does my face.

I have had "paresthesias" since 2001 and neuropathy is on my record but this twitching is entirely new.

I am reluctant to even see a doctor given the wild goose chases that result, often with no answer anyway. I had a paraneoplastic syndrome with my breast cancer and need to check that out. Could be spinal cord/neck. They way I handle these things is to try to figure it out myself then get the doctor to do the appropriate test! My neuro is easygoing, which I usually like, and I imagine he will joke that this is just another code among the many in my chart.

I had an abnormal brain scan in the past which he just said could be an artifact. My eye doc and rheumatologist have in the past suggested I have MS. I have a lupus diagnosis and very abnormal ANA but I doubt I have lupus. I don't need a label until I want to take immune suppressants!

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You have been through a lot! Thank you for sharing. I understand your comment about not needing a label, but my thought is, if I can get a diagnosis then maybe I can get treatment. I foresee one day needing an assistive device to walk. As long as I don't push myself, I do fine. I would walk a mile or so on my lunch break, and I can't even do that anymore because I get so fatigued. Best wishes to you.

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1 reply
windyshores | @windyshores | May 25, 2022
In reply to @carlakay72 "You have been through a lot! Thank you for sharing. I understand your comment about not..." + (show)
@carlakay72

You have been through a lot! Thank you for sharing. I understand your comment about not needing a label, but my thought is, if I can get a diagnosis then maybe I can get treatment. I foresee one day needing an assistive device to walk. As long as I don't push myself, I do fine. I would walk a mile or so on my lunch break, and I can't even do that anymore because I get so fatigued. Best wishes to you.

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Best wishes to you too!

My neuro was out sick on the day of the appt. I made a year ago and now cannot see me until late July. They referred me to PCP. I told them that it is not useful to go to PCP with weird neuro stuff and I will wait.

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kbkb56 | @kbkb56 | Jun 3, 2022

I have an EMG scheduled for Monday due to whole body fasciculations that started about 7 weeks ago. Prior to that I had fasciculations in my feet for over a year).
I’m so nervous. Is anyone else dealing with this?

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1 reply
Amanda Roe | @amandajro | Jun 3, 2022
In reply to @kbkb56 "I have an EMG scheduled for Monday due to whole body fasciculations that started about 7..." + (show)
@kbkb56

I have an EMG scheduled for Monday due to whole body fasciculations that started about 7 weeks ago. Prior to that I had fasciculations in my feet for over a year).
I’m so nervous. Is anyone else dealing with this?

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Hello @kbkb56 and welcome to Mayo Clinic Connect. I am sorry to hear the fasciculations have returned and persisted for 7 weeks already.

There is an existing discussion on fasciculation so you will notice that I have moved your post here. I'd like to bring in members @windyshores, @carlakay72 and @pathfinder2263 who may be able to share more about their experience with you.

Do you know how or why our previous fasciculations went away or what may have triggered their return?

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1 reply
kbkb56 | @kbkb56 | Jun 3, 2022
In reply to @amandajro "Hello @kbkb56 and welcome to Mayo Clinic Connect. I am sorry to hear the fasciculations have..." + (show)
@amandajro

Hello @kbkb56 and welcome to Mayo Clinic Connect. I am sorry to hear the fasciculations have returned and persisted for 7 weeks already.

There is an existing discussion on fasciculation so you will notice that I have moved your post here. I'd like to bring in members @windyshores, @carlakay72 and @pathfinder2263 who may be able to share more about their experience with you.

Do you know how or why our previous fasciculations went away or what may have triggered their return?

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Hello Amanda, the fasciculations in my feet never went away, now they are just body-wide.

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alawrie4935 | @alawrie4935 | Jun 20, 2022

I have had a similar thing happen to me and I’ve been scared. I’m having random twitching and jerking that is mainly my legs and at night but also happens if I’m sitting or driving in the car some. It started about 3 weeks ago and has eased up some but I’m still getting them. Every now and then a finger will also twitch or I will get and electrical type of feeling in a finger. Does anyone know what this could be? I’m 40 years old. A month before this I had Covid so not sure if it could be related. I was also taking lots of antacids due to being on a Verapamil for migraines but I am now not taking those medications I have really scared myself into thinking I have a scary neurological disorder or something else

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1 reply
jenniferemery | @jenniferemery | Jun 21, 2022

I want information on what to expect on my diagnosis with Parkinsonism and dyskinesia. I haven’t been able to connect with any through your site. When I pull up Parkinsonism, it directs me to Parkinson’s disease, which I haven’t been diagnosed with. Could you connect or give me info on Parkinsonism?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 21, 2022
In reply to @jenniferemery "I want information on what to expect on my diagnosis with Parkinsonism and dyskinesia. I haven’t..." + (show)
@jenniferemery

I want information on what to expect on my diagnosis with Parkinsonism and dyskinesia. I haven’t been able to connect with any through your site. When I pull up Parkinsonism, it directs me to Parkinson’s disease, which I haven’t been diagnosed with. Could you connect or give me info on Parkinsonism?

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Welcome @jenniferemery, I did a search and was not able to find a discussion on Parkinsonism but @larryh123 has mentioned it in another discussion and may have some information or suggestions for you. Hopefully other members with some experience will also have some thoughts or suggestions to share with you.

I was not familiar with the condition but found the following information on Parkinsonism.

"What is the difference between Parkinson and parkinsonism?
Image result for parkinsonism and related disorders
Parkinson's is caused mainly by the degeneration of nerve cells in the brain, while the causes of parkinsonism are numerous, ranging from the side effects of medications to chronic head traumas to metabolic diseases to toxins to neurological diseases. Jun 29, 2021"
--- Parkinson's vs. Parkinsonism - Davis Phinney Foundation: https://davisphinneyfoundation.org/parkinsons-vs-parkinsonism/

Types of Parkinsonisms: https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Types-of-Parkinsonisms

Are you able to share a little more about your diagnosis and symptoms?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 22, 2022

Hello @jenniferemery,

I would like to join John, @johnbishop, in welcoming you to Connect. Having a diagnosis of Parkinsonism can be confusing. It does not quite fit the typical Parkinson's (PD) diagnosis, yet it is helped by many of the meds that are used to treat PD.

I have atypical PD and some doctors have referred to it as Parkinsonism and yet others are doubtful about that.

The main thing to consider is how to best treat the symptoms you are having. As John suggested, please share, as you are comfortable doing so, the type of symptoms you are experiencing and any tests or meds that you have tried.

I would encourage you to look at the many discussions in the PD discussion group. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/.

Once, we have a bit more information on what you are experiencing, it will be easier to connect you to others on this forum who can share their experiences with you.

Will you post again with more information about your health journey?

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