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Twitches all over body including face

Hello all, I have experienced twitches (Fasiculations) all over my body now for nearly 3 years now. I have seen a neurologist and thankfully all tests have been clear of the nasties we all know can be associated with fasiculation. I have a confirmed c6 radulocopathy, but was told this could not account for my body wide symptoms. I have a couple of other issues but again told they could not be related. The twitches all started after I hurt my neck (which For info just came on suddenly and I don’t know what caused it). I literally twitch from head to toe most days and the most concerning in my face. I do take comfort in that I’ve been told they are ‘benign’, but they are difficult to live with. So just wondering if anyone else has experienced anything like this? I also experience numbness, tingling, pins and needles and occasional tremors. 

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Comments

  • memerainboltmemerainbolt IndianaPosts: 4,564

    Because of the numbness, tingling, pins and needles, if it were me, I would get a second opinion. 

  • @memerainbolt, thank you for your response. Because I had a clean mri, Emg and ncv they discharged me from my neurologist after about a year and a half. I mention all these symptoms to my doctors. In fact before covid-19, I graced their doors more times than I can remember, but as I can ‘manage’ in their eyes I won’t be offered a second opinion without kicking up a real fuss. The neurologist won’t diagnose but has just put it down to a condition called benign fasiculation syndrome. But believe me there is nothing much benign about this condition :-/ . So just trying to find someone has experienced anything similar to me thanks. 

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  • @memerainbolt, just to add to my previous post, because as I say, all of these symptoms started after my issues with my neck. 

  • Do you get any pain with this? I agree would get another opinion.

  • @charry, yes I get varying degrees of pain, from shooting pains to spasms. 

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  • SarahW - I can empathize with you in part because I had many the same symptoms on my right side of body from my face to my toes for several years.  When you body is crying in pain, there often is a medical cause.  Additional specialists I used for diagnostic work-ups beside neurologists were neurosurgeons, a neuromuscular doctor, orthopedic surgeon, rheumatologist and ENT surgeon. 

    Sometimes, one needs to become a "squeaky wheel".

  • Second opinion totally agree. I have fascinations in my foot and calf but can only be managed with muscle relaxants, massage, repositioning.  

    Stiff neck is so right. I saw a Rheumatoid Dr. Physiatrist as well. I would want to know by several Dr opinions your family Dr. Makes all the referrals, and usually asks if you have a Dr in mind or just refers you like mine did. 

  • @stiffneck7 and @charry thank you for your responses. I am definitely going to grace my Drs doors again once things settle down with the Covid situation. Perhaps I’ve always been a bit scared to ‘demand’ a second opinion given the symptoms I have. By the time I reached the neuro in this journey, being told after 2 years that they found a mild c6 radulolocopathy and more than likely I had benign/cramping fasiculation syndrome was bizarrely a relief. Also I had always been perfectly healthy until this, so in my eyes I was getting quite a few tests and seeing various people etc. I’ve had as many blood tests as I can remember, and also was referred to the muskoskeletal service as well as the neuro. I do also see an endocrinologist for an incidental finding picked up on one of my my mris, but again the endo has ruled this being a cause for my symptoms. @stiffneck7, can I ask if you had similar symptoms, what (if known) was the cause of yours? It’s the fasiculations that have always concerned me the most and that’s why I joined this spinal forum to give me piece of mind (that may sound strange I know) that these could gave been caused by my neck, because as I say, up until now all the medics are saying they can’t. 

  • SarahW - For me, my symptoms were caused by an old whiplash injury over 40 years ago that resulted in a ripped facet joint at my right C3/C4 facet joint and on-going deterioration of the posterior part of my cervical spine.  My spine is now fused from C2 to low in my thoracic spine.  I now have permanent spinal cord injury in my mid-cervical area.

    I was kicked around for 17 years in pain before I was able to get access to a competent spine surgeon who actually listened to my story, ordered appropriate diagnostic tests and actually addressed the primary issues.  If I had been able to get timely intervention, my current neurosurgeon thinks I might have been able to avoid this SCI injury.

    When the diagnostic test results come back and the doctors report, "nothing found", that is all it means, nothing found.  Ones body does not normally cry out in pain if there is nothing injured.  Does that make sense?

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