Connect
Benign fasciculation syndrome (BFS)
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
Hi, I'm a 23 year old college student and I found this group because like many here, I started having twitching out of nowhere and it spread to my whole body (hands, legs, tongue and back). The truth is something strange, because this started just a month after I was given covid, and a month and a half after I stopped taking amitriptyline (since I suffer from migraines), I had a CAT scan and it came out fine, I also had an EMG and everything came out in order, my strength and reflexes are normal. I don't think it's because of the caffeine, because since I was a child I have always had coffee, so I guess my body is used to it. It is a very frustrating situation because there are days when one tries to forget and want to look for the causes, but there are days when there is always the ghost of ALS at your back, and the fact of being young does not help much sometimes, as I have read that when ALS occurs in young people, this is usually a very slow progression and can take years to manifest itself, I would appreciate if someone can help me, greetings.
View Translation
-
Like -
Helpful -
Hug
2 ReactionsHello @jorged and welcome to Mayo Clinic Connect. It is so smart of you to connect with others who can understand. I would like to welcome members who have recently contributed to the discussion such as @pathfinder2263 @willard74 and @kennapie.
To clarify, have you been diagnosed with ALS and/or BFS?
-
Like -
Helpful -
Hug
2 ReactionsBFS and Cramp Fasciculation Syndrome
-
Like -
Helpful -
Hug
1 ReactionCfs
Just Bfs
I can really appreciate the symptoms your are having. I get twitching in my claves and upper thighs. The anxiety that is related to these twitches is making me crazy. The flood my legs when I’m at rest, but when I move they subside. So I am constantly moving.
My legs hurt because I’m always stretching or working them out and I’m tired.
I find that when I’m relaxed - after taking my Ativan - everything goes to sleep. This makes me believe that these twitches are activated by my nervous system. I’m still struggling on how to deal with them during the day.
Does anyone have any strategies that work for them for this condition ?
Hello @rollins2000, Welcome to Connect. I know it's frustrating when you are struggling to find an answer to what's going on with your health. While we wait for other members to share their experence, I thought I would share this patient story that I read that sounds similar.
Living Each Day to the Fullest: https://www.gbs-cidp.org/patient-stories/living-each-day-to-the-fullest/
@jod12, @fitzy, @kennapie, @willard74, @pathfinder2263 and others may also have some information or suggestions to share with you. Do you think the anxiety you mentioned may play a part in your symptoms?
-
Like -
Helpful -
Hug
1 ReactionI am 49 and 2 years ago my eyelid started twitching. One year later, I had trouble walking and dizziness, which lasted 2 months. I also felt little burning zaps that happened randomly all over my body (I thought I was getting bit by something) 2 months ago I started having trouble walking again (balance and fatigue) still having eyelid twitching, skin zaps, and now the muscles in my feet twitch and my toes move on their own and sometimes curl. I also have numbness and tingling in my legs. I saw a neurologist who ordered an MRI that showed some white matter, but he said it was normal for my age. He also checked me for myasthenia gravis (neg) After 3 appointments he said he was "handing" me back to my PCP. He said I have anxiety. I am searching for another neurologist
-
Like -
Helpful -
Hug
1 ReactionI 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!
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?