Have been experiencing muscle tremor and shaking for 3 years

Edited , 6 users are following.

Hi everyone, hope you are doing great. So i have been having the problem with muscle shaking/ tremor for 3 years more. It happened out of all sudden. I feel the shaking start form the joints (wrist, neck, shoulder, hip, etc.) if move them up and hold still or loosen them down. For instance, if i stretch my arms all the way up it is okay, but when i bring them down, i would feel the shaking and it only happens at certain angle. I have done several test ( EMG, NCV, blood test, etc. ) except MRI with negative/normal output results. Also all of those neurologists that i have been to only came up with stress and anxiety.

I am wondering if has anyone here ever experienced this and found out the reason why? Because i am not convinced with stress and anxiety at all . Thank you

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  • Edited

    ive had the same issues since july 19 and emg and mri and spent thousands of dollars. I dont have a true diagnosis yet but so far im hearing could be muscle fatigue, chronic fatigue syndrome (ME) or post viral syndrome. I also get muscle twitches. You could also have a pinched or compressed nerve possibly? I take elavil and its helping mask my issues a bit but my neuro still doesnt know the root cause.

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    • Edited

      everything you described is identical to what i experience. So in july 2019, i woke up in the middle of the night, like something woke me up at 3AM. My whole body felt weak and shaky. I drove to ER because my legs felt like floopy noodles. They felt like they wanted to buckle at any moment. Upon getting to ER, they ran bloodwork, urine samples and a CT of my head. Clean, nothing found. Sent me home for anxiety. The same week, my balance felt off, my hands dexterity felt off, my muscles became shaky. I mean literally every muscle in my body. My wife kept telling me my muscles are fatigued. I was describing it as muscle weakness but she says theres no clinical weakness (shes a neuro NP). She says my weakness is perceived. So as all of this is happening, i get a pain in my left leg and dullness in my left arm, i get muscle twitching, stiff hands, and some lower back pain in august. I also developed severe anxiety so i started having chills, sweats, insomnia, and still shaky muscles. Went to PCP, neuro, a neuromuscular specialist (whos still working with me). She gave me a work up of literally everything. I mean everything. So far ive tested negative for everything, CTs, MRIs of head and back, CT spine, tests sent out to mayo clinic, genetic tests, 2 EMGS, 2 Nerve Condutions, only think that ive found thus far is as all of this was happening my PCP said my epstein barr numbers were high suggesting a possible reinfection and maybe i now have chronic fatigue syndrome or that EBV has effected my nerves. My neuro however isnt so sure and has said she doesnt quite know just yet but my wife said maybe Post Viral Syndrome and it cant last for years. So far 9 months later i still have same symptoms including twitching but weird enough i havent gotten worse. So no one truly knows whats wrong with me yet. I have another 3 month follow up with my Neuromuscular doc end of May.

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    • Edited

      First of all. Thank you for sharing with me those. Speaking of PVS or CFS, i recall having a severe flu before the shaking starts taking over. That flu caused me a crazy headache and cough for more than a week. Then suddenly one day after waking up i realized there was a a slight tremor on my thumb and it has been lasting till now. But since the recovery from that flu, i have not got any of flu, cold, cough, fever, etc. till now which is strange for me as well. Before all of this occurance, i was an extremely active person and very fit as well. But then that shaking took away mostly all of that. i started to gain way a lot. However, i still could maintain 5 miles jogging every if i want to. Doing exercises is definitely help to forget about all of this. Anyways, that's my journey. i m going to have another appointment with a neurologist ( one of the most famous one in the city) to see how would he say again about my condition. If everything returns clean again i will probably have to accept it or else i dont know. Once again, thank for replying. wish you all the best

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  • Edited

    Sounds like,(dpending on your age,) You might have Parkinson, atypical, multiple systems atrophy!

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    • Posted

      My tremor is not resting tremor and it also happens on both side of my body. i asked every neurologist that i d seen and none of them suspected that. I dont know much about atypical or multiple a

      systems atrophy but i will ask my neurologist for next appointment with him. Thank you

      PS: i am male 30 asian

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    • Edited

      You need to see a neurologist that specializes in muscular disorders like ALS and or Mulitple Systems Atrophy. Since it is very rare and doesnt present itsself the same in everyone. it doesnt have resting tremors as does regular parkinsons diease.

      All get very extenstive autoimmune blood work testing, and blood toxin screening.

      Neurologist are too quick to say its anxiety and stress but they really dont know sometimes but wont tell you that!

      Just because a diease or disorder is rare, doesnt mean youre not the rare exception!

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    • Posted

      thank you. Yes, i believe i have been there . i also just passed by your post. How are you now ? you sound full of depression and anxiety. i bet you know those significantly make the everything worse. Wish you all the best !

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    • Posted

      im fine Im not full of anxiety or depression. I have a diagnosis

      Its terminal

      Im going to die from it, there's no treatment or cure,

      So im good with it,

      and I wasnt crazy from Anixety. I knew my body and pushed until I got answers.

      And thats all Im suggesting. If you know something is wrong and you know your body, dont settle!

      Sorry but Im not full of depression. Im looking ahead not behind! Theres glorious days ahead for me sir!

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  • Edited

    hii! i am on the exact same boat as you. i have been experiencing the exact same symptoms for about 6 years now and have gone to multiple doctors for testing. everything has always come back negative and doctors have never been very alarmed by it. lots have told me that some bodies are just built this way and these things can happen. does not mean that there is an underlying cause. trust your doctors - they are smarter than you think! i know its hard to accept that its nothing but dont let the anxiety take over. as long as you are not experiencing worsening symptoms or pain, do not worry.

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    Thank you so much for reassuring. Actually i have gone around google before landing here and most of them say similar thing as yours. But still hearing somewhat partly ease my mind. 6 years is definitely not short at all. How do you cope with those anxiety and stress that it brought to you? A little bit more, beside those symptoms i also have my muscle shaking when it is out of reach like overstretched. Have you ever had that as well ? Thank you once again for your words

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  • Edited

    couldn't not sleep because anxiety and went to a pharmacy and the person who sold the medication told me about how good those pills are concerning sleep, but to take only on s.o.s mode, meaning: not everyday. another doctor told me that i could take it everyday and so i did. basically i felt drugged every time i took those pills and the more anxiety i was felling, the more pills i was taking every single day because it made me sleep. so i started getting weird reaction in my head, my neck and my legs,,,,,but specially in my brain, i felt some kind of earthquake happening every single day. my head would start shaking just like some massage vibrator, but in my head, neck and legs and suddenly i start listening what the they told me at the pharmacy,,only to take on s.o.s, in which case i didn't do. i went to hospital and they found nothing with scans. i went home and decided not to take any more pills to sleep. just try to sleep watching TV and try to relax has much as i could during the day to stop anxiety,,,and it worked,,,it stopped once for all. the medication was my problem

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    • Posted

      I see. The good thing is that you found out the reason and it worked out. That is something i have been wishing for a long time since all of the shaking started to bother me. For my case, the only pill that were prescribed was anti-stress or anti-anxiety ones. But i stopped because nothing worked. It remains the same. Doing exercises is the only thing that somehow make me feel better but it couldn't be strong enough to stop me from thinking about what caused all of this. It is just so frustrating, it really is. Anyways, thank you for sharing your story and congratulations on your recovering !

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