Muscle twitching and pain, mostly just one side of body

Posted , 18 users are following.

It started Oct 1 with a right index finger twitch (not tremor), I could see the muscle on the inside of the finger firing causing my finger to move away from the rest of my fingers, it lasted only a couple of seconds. It happened 3 seperate times that day, the next day my thumb and middle finger of right hand joined the fun too, by the 3rd day my left hand pinky was twitching on and off as well, all these twitches would come and go throughout the day, they were NOT constant.

I began to freak out and my anxiety went throught he roof, I went to my family doc who suggested a neuro, I went to a neuro who did a brain scan and EMG, all was clean, and he suggested an MDS, I went to the MDS and he ruled out Parkinsons/ALS/and MS, he wasn't sure what was happening or if it was even neurological. A couple doctor visits later with every type of blood test being clean, I'm not sure what to do, the doctors don't seem to know what's wrong.

It's not been 4 months since this started and my twitching is widespread all over my body now, still not constant, but it does occure everyday, sometimes even multiple places at once. But my biggest issue is PAIN!

My pain started a week into this so I've been dealing with it for about 3 1/2 months now, first my hand, then my arm, now my shoulder and hip, mostly my RIGHT side, although it does happen on my LEFT as well, just not nearly as much, the pain is pretty much constant and just moves around those areas, sometimes top of my shoulder, shoulder blade, collar bone, etc..this happes hourly but it's always there. It's affecting my sleep (it's fragmented now) and making me depressed, when you're in pain all the time you just don't enjoy doing anything you normally did.

My biggest concern is that this is all mostly right sided but now it does seem to be "spreading" to my left which I'm not sure if I should be happy about that or not, I feel like I'm going to reach a point where I just wont be able to move one morning, it's really scary not knowing what's wrong with me.

I'm going to see a psych, family doctor again, and the neurologist again just to make sure nothing comes up and to hopefully get something to help with this right side pain.

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26 Replies

  • Posted

    Hi it might be Isaacs' syndrome is a rare nerve and muscle (neuromuscular) disorder. Doctors may also refer to it as neuromyotonia, Isaacs-Mertens syndrome, or continuous muscle fiber activity syndrome. It's characterized by abnormal nerve impulses from motor neurons of peripheral nerves. These impulses cause continuous activity in muscle fibers.

    Signs and symptoms of Isaacs' syndrome include:

    Continuous or intermittent twitching

    Progressive stiffness

    Persistent undulating movement in the skin that lies above the affected muscles (myokymia)

    Muscle cramps

    Slowed movement

    Increased sweating

    Slurred speech

    Difficulty chewing and swallowing

    A doctor may diagnose Isaacs' syndrome by electromyography, which measures the tiny electrical discharges produced by muscles.

    You should ask your doctor for an EEG. Just to check.

    And what kind of brain scan did you do? You can do MRI , CT scan and PET scan.

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  • Posted

    Oh and you can ask your doctor to check for any abnormalies in you kidney just in case.
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  • Posted

    Thanks for the info, I did come across neuromyotonia in my research when trying to figure out what was wrong with me but none of my doctors think it's that.

    I've had every thing they can test with blood done to me as well as several urinalysis so I think it's safe to say my orgons are ok..but who knows?

    I've had a brain mri and cervical spine mri, both clean. The only things I haven't had done yet are a lumbar puncture and a muscle biospy, I'm getting close to requesting both of those..I'm sick of this nonesense.

    I just saw the neuro again this past friday and he did a 20 min in room clinical exam and saw some of my muscle twitching but didn't think it was anything major, my biggest concern is PD as most of my symptoms started on one side (although I'm having more and more sensory stuff on my left side now) but he really doesn't think it's that and told me to take some cymbalta for the pain and if things presist in a month, make an appointment with another neuro to get a second opinion.

    I'm really happy that I currently don't have something that's a red flag for my doctors, but at the same time, I know something is wrong and would like to figure it out so I can put a "name" on it, not knowing what is happening to your body makes everything worse!

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  • Posted

    My own issue with anxiety and depression lead to somatic response of left sided numbess and also around my head. Then anxiety increased due to focussing on the somatic symptoms. When I started antidepressants, that went away.

    I found a link regarding psychogenic movement that could be related to anxiety:

    Wondering if you have seen your psych, or have started the Cymbalta you mentioned.

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    • Posted

      Thanks for the input and for sharing your experience. 

      I was a little hesitant to start the Cymbalta as I don't like the idea of being on an anti-depressant but as Cymbalta is also used for fibromyalgia patients to treat pain I was optimistic that it was a good fit for me. The first two weeks were a little awkward as I my body adjusted to it but by the third week I could tell it was starting to work, it wasn’t some magic pill but my pain wasn’t in forefront anymore, I could actually start focusing on other things again, it helped take the edge off.

      After being on Cymbalta for about 2 months I can say it defiantly helps and most surprisingly it doesn’t feel like I’m on a drug, I forget that I’m on it, my psych recommends I stay on it for at least 10-12 months, which I plan on doing, as of right now I’m taking 30mg a day, not 60mg (the typical adult dose).

      Health wise I’m doing better mentally, but still not great physically. Since my last update I’ve seen the head neuro in my area and he did the most thorough clinical exam yet and he couldn’t find anything wrong so I try to remind myself of that when my PD fears start to creep back.

      I still get twitching, which as of late has mainly been in my left hand (which is odd as this started in my right hand), and it’s more of a vibrating muscle, the muscle at the base of my left index finger will twitch/spasm so fast it’s as if it’s being electrocuted or something, it comes and goes. I still have pain mostly on my right side which seems to get worse after even just a little exercise; it’s focused in the right side of my neck, right shoulder, and right hip, sometimes my right thigh muscle as well. I’ve started to look into my genetics for answers as well as my diet, doing a simple food blood test I found out I’m moderately allergic to corn, soy, wheat, and peanuts, all of which I eat on a regular basis so I cut all of that out hoping that might be playing a role in this. Genetic wise I found out I have a mutation that prevents me from processing 70-80% of the folic acid I get so I have started taking the proper supplements to help mitigate that.

      I HOPE that changing my diet and continuing the Cymbalta will help or at least is a step in the right direction, if the doctors don’t diagnose me with something then that’s really all I can do for now along with prayer.

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    • Posted

      Hi there, 

      was just reading your story. Came across it because I have pain and spamming down entire side of body. It's debilitating! Prob a little different than yours. 

      But I did see you hit on a key word... "Kidneys". 

      Ive been learning about "the great lymphatic system" which bathes every single cell in our bodies and carries waste, toxins, etc., out of the body! It does so through many canals & nodes, esp through our kidneys!. (A quick spoiler.. If urine is clear, you are NOT filtering as u could thru kidneys).

      If lymph can't remove the waste/toxins out, we get all kinds of reactions, as different as each one of us is because of so many different factors! Genes, diet, geographical area, etc. The lymph system is 4 times larger than the vasculatoey system yet most docs focus 99.9% on the blood & have no idea lymph is so vital! Not their fault (atleast until they become aware of it) because it's what they were taught in medical school as well as disease and RX being the 2 focuses. 

      Learning about this has been fascinating, super easy, and didn't cost me anything either. So I'm going for it. I see the difference already & really hope my body can heal 100%.

      Theres no way I could teach you about it here, and your situation will be different from mine, but every single person can benefit greatly from learning about it. 

      There are Ytube vids on it, some ppl more educated than others. I've learned the most from a white-haired man who's lived & taught it for 45 years & used to be a medical doc.,

      i hope you'll find your way to look into this major super important function of our bodies that, to me, is the answer to most every dis-ease our bodies are warning us with. 

      God bless. 

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  • Posted

    Hey just come across your post on google when I typed my symtoms for 6 months now I have had my fingers constantly tremble then muscke twitches and my fingers go stiff and move on There own it's moved into my legs and even my lips and tounge have the pulse twitching im really worried I now have a dull cramp pain in fingers arm and legs im really anxiouse and my anxiety is getting a right thrill out of all this I feel it's never ending a couple weeks ago I couldn't swallow now this ! It's got worse this week and my fingers even started locking now and again I also got cramp in my toe last night my toes where paralysed for a good 5 minutes and I'm really scared to go to doctors they won't give me all the tests like they have you I know It and I will be told either bad news or nothing di you ever find out what it was im 23 and my life is upside down because of this xx
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    • Posted

      Have you seen a doctor yet? Your symptoms seem to be significant and causing you a lot of anxiety. I know how horrible it can be. Please go see a doctor and get a medical opinion, update us when you find out more.
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  • Posted


    Wondering if you ever figured out what's going on with your symptoms? I have many similar ones more on the right side then the left with a feeling of weakness and some mild muscle loss in my right hand. Also fatigue quite easily and tend to get mild eye pain and floaters in my right eve. I too was cleared by 2 neurologists and they can't offer any explanation as to what they think is going on.

    Mine have been going on for about a year now.

    Thanks and best wishes.

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  • Posted

    Hunter have you considered seeing a qualified chiropractor? I have found that I have many unexplained spasms, pain, and twitches from my neck and back being out of place. The Atlas and Axis have a huge effect on out overall health and Mental stability. I found when I am properly aligned my anxiety, depression, pain, spasm, and twitches improve or go away. Our body has a great memory though so without exercise to strengthen your muscles to support your back it will fall back out of place usually within days. I as fortunate enough here in California to find a Doctor who charges s one time monthly unlimited fwe to be seen and he educates you on how to strengthen and repair your spine. I do have degenerative disks, sclerosis, 2 breaks in my tail bone, and arthritis in my back so certain degree of pain is expected in my case but not nerve twitching and spasms. Could help you find some relief as well. Good Luck. I f I understand this site because of the last day now my pinky and ring finger have had a constant spasm that feels like my pinky is trying to get away from the rest of my fingers and my hand hurts trying to make a fist or fully straighten my hand. Idk getting old sucks!
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  • Posted

    My friend is dealing with everything that you are dealing with and it has been 10 months. He's gotten all types of tests done and the only thing that he has gotten fixed is the excessive twitching, now it only happens every once in a while. I need you to please, I'm begging, please reply with an update. We all don't know what to do.

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  • Posted

    Hi hunter, I have your same symptoms but doctor can find anything. Please if you find the cause of your symptoms let me know. Thanks a lot God bless you
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