Benign fasciculation syndrome (BFS)

@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

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.

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.

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

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

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.

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

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...

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.

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