Long term muscle twitching, some pain, no help yet

Posted by missle @missle, Dec 8, 2023

Hello All. First time joining a forum like this. One year ago, I started wide spread muscle twitching. Just over my knee for 2-4 weeks and then - boom - my whole body was twitching non stop. Dr ran some blood tests, which were all fine except some minor inflammation. Referred me to a neurologist but it took 7 months to get the appointment. Over the past year, the twitching is daily but it isn’t non stop anymore. Sometimes one area is worse (last week my left elbow area, past couple of days, my right biceps). Legs are every day. I get some weird sensations in my feet and toes sometimes and zingers - painful electric shock like pain that jerks my muscle - but those are only 5-10/week. Neuro exam was fine - I have perceived weakness but not overt weakness. My EMG/NCS isn’t scheduled for another 7 weeks (13+ months after things started). When a new twitch pops off (like in my arms the last few weeks) I get scared about ALS. I’ve tried to learn more about BFS but there’s not a lot out there. I have notable less muscle in my non-dominant hand and a low level of pain daily. Hoping someone else has experienced something similar while I wait the 7 weeks for my EMG/NCS…. Both looking forward to getting some answers and am nervous about what those answers may be.

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@missle
Glad you joined us!

Do you have any problems with balance? Is your gait “normal”?

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@SusanEllen66

@missle
Glad you joined us!

Do you have any problems with balance? Is your gait “normal”?

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Thank you. Not really. I can balance on one foot for a minute and my gait is normal

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@missle

Thank you. Not really. I can balance on one foot for a minute and my gait is normal

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@missle ok. I was thinking of a situation where balance is a problem.

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I’ve have muscle twitching for 5 years now…. I have explained my symptoms before on this forum….. …………classic BFS ……… you mentioned muscle wasting in one of your hands…. Is there weakness in that hand? When I first experienced the random twitching all over… I was terrified it might be a als… and would notice things because of that paranoia…there are so many things it could be and most of them more benign than als…..remember ALS is extremely rare the odds of you having that is slim… you should at least be checked out for autoimmune diseases and maybe an mri… I started to take taurine supplements and that has decreased my twitching by 70 percent

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I have been diagnosed with Myelomalacia, which can be diagnosed by MRI...mine is cervical. I have twitching in various places, shoulders, arms, sides.....I attribute it to the Myelomalacia. I, too, agree with an MRI. Best wishes getting to the bottom of this.

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@twitchy

I’ve have muscle twitching for 5 years now…. I have explained my symptoms before on this forum….. …………classic BFS ……… you mentioned muscle wasting in one of your hands…. Is there weakness in that hand? When I first experienced the random twitching all over… I was terrified it might be a als… and would notice things because of that paranoia…there are so many things it could be and most of them more benign than als…..remember ALS is extremely rare the odds of you having that is slim… you should at least be checked out for autoimmune diseases and maybe an mri… I started to take taurine supplements and that has decreased my twitching by 70 percent

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Thank you for the perspective. I don’t have obvious weakness, just some stiffness/pain with movement and the feeling that things are harder to pick up. They did a brain MRI but not a spinal one. I do have a herniated thoracic disc (have had it for 6-7 yrs) so maybe that plays a part - though I twitch above that point in my spine too so am not sure. I’ll read over your previous thread. Thanks again.

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