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Long term muscle twitching, some pain, no help yet
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”?
Thank you. Not really. I can balance on one foot for a minute and my gait is normal
@missle ok. I was thinking of a situation where balance is a problem.
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
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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1 ReactionThank 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.
Hello. It’s been almost 1.5 years since my last comment. (2.5 since my body decided to be a twitching machine) Twitching never went away but I learned to deal with it. The cramping is random and I can go months without so when it pops back up, so does my anxiety. My hands have gotten worse (hard to open jars, life frying pans even with one hand, etc), there’s pain and I’m dropping things a bit more often. Having some speech and swallowing troubles too. Have made another appointment to get checked out as I imagine each set of symptoms can have a plausible unique cause (arthritis, I have GERD flaring, and my Dr says fibromyalgia but I’m not sure I believe it). My ALS anxiety was pretty well controlled for the last year and now it’s back. Anyone else have a multiyear twitching and weakness journey like mine?
How old are you? I’m 55 and have experienced this for 8 1/2 months.
Is it okay to ask how old you are? I’m 55 and experience this too. Mine started after a COVID-19 infection.
I am 67 and have been having fasciculations for over 6 years now…. Absolutely no muscle weakness……. If you don’t have any muscle weakness, then don’t worry about it…. mine started happening when I had a bad tooth infection that I let go for a while….it’s random and it’s all over my body….. I have grown accustomed to it…. As I was typing this I had 10 twitches in different places ….. they are random and constant but mostly just 1 twitch and done in a spot