Benign Muscular Fasciculation

Posted by captainanxiety8 @captainanxiety8, Sun, Mar 10 9:03am

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?

Liked by Leonard

@captainanxiety8 I don't have any experience with your symptoms, but I found articles that may help.

It sounds like your doctors don't know the cause of your symptoms and are using a wait and see approach. You should advocate for yourself in looking for the cause, and asking questions here seems like a good start. I also found information that electrolytes and body chemistry maybe off causing the contractions. That might be an area to explore to see if this might help.

These symptoms are similar to ALS. I met a patient with ALS in the waiting areas at Mayo when I was there for neurology testing and he had constant twitching. The neurology testing can rule out something like ALS. I'm not trying to cause anxiety, but no testing has been done to rule out serious diseases like ALS.

You may want to consult a functional medicine doctor or one in the https://www.aaemonline.org/ about body chemistry issues and deficiencies . You can find a physician search link here. The doctor who founded the Environmental Health Center in Dallas did pioneering work on body chemistry and disease. https://www.ehcd.com/ They sell expensive medical volumes for doctors and may be source of information for you. You might also want to consider coming to Mayo is that is possible for you.

https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022
https://www.mayoclinic.org/departments-centers/neuromuscular-disease-group/overview/ovc-20443670

https://rarediseases.info.nih.gov/diseases/6205/cramp-fasciculation-syndrome
https://www.dovemed.com/diseases-conditions/cramp-fasciculation-syndrome/

This article mentions myesthenia gravis, a muscle disease. https://www.ncbi.nlm.nih.gov/pubmed/16340924

This abstract talks about developing these symptoms after a viral infection https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.410340419

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Thanks Jennifer, much appreciated. The two Neurologists I saw said there was no sign of weakness and said they did not want to subject me to painful and unnecessary tests. Both said that since I've had light twitching in the past that I should chalk it up to anxiety and stress. I don't feel any weakness, but then my body is in overdrive twitching all the time which is so strange and uncomfortable. I may go for a third opinion but not sure what to do if I get the same diagnosis again.

Liked by Leonard, hotfooted

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Hi, @captainanxiety8 – I wanted to add my welcome to Mayo Clinic Connect. I'm glad to see you've connected with @jenniferhunter. Sounds like you've been diligent on getting medical professional input on your situation and seeking people who have had common experiences.

I wanted to also introduce you to @lizaa @elained @jakedduck1 @froglegs @dawn_giacabazi, all of whom have mentioned myoclonus (see Mayo Clinic information https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459) and may have some thoughts on your situation and some input on whether they've experienced something similar.

Liked by Leonard

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Hi Just wanted to connect with someone who is knowledgeable about Primary Progressive Aphasia

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Hi @captainanxiety8 , I was diagnosed with myoclonus 10 yrs ago. It a side effect of a medication called Reglan, but anyone can develop movement disorders at any point in their life. Mine causes a strong jerk throughout my body, or sometimes body part, mainly when falling asleep or awakening. I do have the muscle twitching in a muscle during daytime hours, once in a while that is obvious. Sometimes it can go on for a full day or a couple of days. But I have had an MRI of the brain and spine, and an EMG, just to be sure there was not another underlying disorder. Klonopin has been very good at keeping my symptoms under control, but I am VERY slowly tapering to see if it may have resolved or lessened over the years. I would at least request an MRI of the brain, just to be sure. It won't hurt to do one. It may even be beneficial to do one, and see that fasculation is the only issue, and not something causing it. Best of luck with your doctor

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Thank you all for the nice replies, I appreciate it! I went to another Neurologist and he did not want to do an EMG or MRI. He did several physical tests and said my strength is normal and he did not see anything that would warrant further tests. He said it's benign so I have to live with it and hope it goes away eventually. Google makes it much worse as every article about fasciculations always points to ALS but then mentions caffeine, stress, lack of sleep, etc as other causes which is confusing to read.

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@captainanxiety8-Not googling too much is the best idea.

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Went back to the Neurologist after the fasciculations(twitching) got worse and he did a nerve conduction study and EMG and both were clear/negative. He said what I have is benign, but I'm having a hard time accepting that. Not to mention the fact that this may never go away and it feels like someone flicking/poking me at different spots all around my body, with random flickering of my muscles around my arms and knees throughout the day. I asked about MS or Neuropathy and he said it's not those either. I'm at a loss and not sure if/how I can pursue a diagnosis. My regular doctor put me on Pregabalin and it's calmed the twitching down a lot, but it's still there and in places I've never had twitches before… I'm just a walking pile of benign conditions, geographic tongue, seborrheic dermatitis, petechiae, it seems I have the bad luck of collecting all these…

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@vivienne

Hi Just wanted to connect with someone who is knowledgeable about Primary Progressive Aphasia

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Hello @vivienne – I wanted to add my welcome to Connect. You might want to talk with others in this thread on aphasia https://connect.mayoclinic.org/discussion/how-did-you-know/ or start a new discussion so that all those who've mentioned this in Connect may meet up in one place. Look at Get Started on Connect in the gray box at the bottom of any page, then see Start a New Discussion.

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I am uncomfortable that these symptoms of itching and twitching are interfering with the quality of your life, and sleep. I would go to your primary doc again, and tell him this. I am just a person, but I am uncomfortable that you are not getting relief. I dont know what you should do medically, and do not want to cause fear. If I was you, I would ask the primary doc about getting at least an EMG for the twitching. The itching I have no idea what to do except something like Benadry for itch, or another antihistamine. Are you allergic to something? Anyway, absolutely check in with your primary care physician to put your whole body symptoms together. Best of luck…..Lori Renee

Liked by lizaa

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Well, good news is I am trying Lyrica and it's making things better, much less twitching, although the pain is sort of still there. So there is a little relief.

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@captainanxiety8

Well, good news is I am trying Lyrica and it's making things better, much less twitching, although the pain is sort of still there. So there is a little relief.

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Hello, @captainanxiety8 – wondering how things are going with the pregabalin (Lyrica) you were taking for your twitching and pain symptoms?

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The Lyrica helped a bit but the twitching is still there. Went for another workup and Thyroid came back show slightly low TSH(0.44) and slightly high T4 Free(19.5), but doctor thinks it's still somewhat normal. TSH was 0.5 a month ago so not sure if it's related. Doc said for a man my age, TSH should be at least 1.0 or a bit hight and T4 Free should be around 12-14 so my numbers are slightly odd. Tried sleeping pills last week and managed to get a few full nights of sleep that made me feel a lot better.

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Hey there @captainanxiety8 , I just wanted to let you know I went through the same thing about 10 years ago. I’m 37 now. It scared me so much that after getting several opinions of it being benign, I went to the Mayo Clinic from Canada to find out what was happening. They felt it was benign and stress related. I always find that hard to believe, however stress does make it worse. It took just over a year of pretty aggressive twitching for it to finally subside. Over the years I’ve had minor relapses and I’m always trying to guess the triggers. Stress and illness tend to bring it on. Caffeine and alcohol make it worse. Gluten intolerance is another big one for me. It takes months to subside and tends to go away without my noticing. I also get pins and needles and nerve pain with it as well. Currently I’m having another relapse after years of nothing. I was feeling under the weather for the week and it just hit me again. It still gives me major anxiety when it occurs. Even though I’ve been down this road I always fear it’s something worse. I Have to remind myself that it does subside eventually, even though it’s hard to believe. Your not alone. I think the best remedies is trying to get more sleep, less stress, less anxiety, gentle exercise (walking) and a healthy diet. It’s a tricky one because for me the condition itself is the cause of my anxiety and that’s just makes the symptoms worse. I hope your doing a little better now. I truly feel with this one, time heals and relapses happen. I also feel my initial onset of symptoms came after a bad virus.

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@didi09

Hey there @captainanxiety8 , I just wanted to let you know I went through the same thing about 10 years ago. I’m 37 now. It scared me so much that after getting several opinions of it being benign, I went to the Mayo Clinic from Canada to find out what was happening. They felt it was benign and stress related. I always find that hard to believe, however stress does make it worse. It took just over a year of pretty aggressive twitching for it to finally subside. Over the years I’ve had minor relapses and I’m always trying to guess the triggers. Stress and illness tend to bring it on. Caffeine and alcohol make it worse. Gluten intolerance is another big one for me. It takes months to subside and tends to go away without my noticing. I also get pins and needles and nerve pain with it as well. Currently I’m having another relapse after years of nothing. I was feeling under the weather for the week and it just hit me again. It still gives me major anxiety when it occurs. Even though I’ve been down this road I always fear it’s something worse. I Have to remind myself that it does subside eventually, even though it’s hard to believe. Your not alone. I think the best remedies is trying to get more sleep, less stress, less anxiety, gentle exercise (walking) and a healthy diet. It’s a tricky one because for me the condition itself is the cause of my anxiety and that’s just makes the symptoms worse. I hope your doing a little better now. I truly feel with this one, time heals and relapses happen. I also feel my initial onset of symptoms came after a bad virus.

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Thank you! This really helps to know that I'm not alone. You're right that the stress makes it worse, but the fact that it happens makes me stressed, so it's a bad cycle. I'll definitely take your advice, I'm trying to change my lifestyle to eat healthier, go jogging, and stop drinking entirely(I'm a social drinker but never too much). I keep wishing there was some obvious clue that could lead to a clear diagnosis and possible cure for whatever it is, but I guess I have to accept that it will remain a mystery.

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