Twitching all over body, fearlessly no the worst.

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About a month and a half ago I had surgery to have my gall bladder removed. About a week after the surgery I noticed my right calf was stiff, kind of like a charley horse feeling. That lasted about a week then the muscle twitching started. Over the last 6 weeks it has gradually gotten worse and has moved to other parts of my body. My calves still twitch from the moment I wake up to when I go to sleep. It has spread to my stomach, thighs, lips, eyes, forearms..... you name it and I’ve had it twitch. I’ve also had the muscles in my legs and forearms get really sore like I had done a bad workout. But haven’t done anything to demanding. Went to my doctor who brushed it off as a vitamin B12 defiancy  at first. Gave me a shot of B12 and have been taking it at home for about 4 weeks along with Magnesium and a multivitamin. The twitching has only gotten worse and pain in arms and legs comes and goes. I did go to a neurologist for an initial visit a week ago. He didn’t notice any muscle weakness but did see the twitching. I am scheduled to go backing a week for an EMG but am scared I’m gonna get the worst news from this. I guess I’m just wondering if there is any way this is anything other than a NMD that will just keep getting worse. Also I have had pin in the middle of my back just to the right of my spine for the last two years that has gotten worse lately too. Had an X-ray on it that came back normal so I don’t know if that could be something that has to do with this. Have had blood work already for thyroid and Lyme disease. All clean. Freaking out a little bit.

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  • Posted

    Hi Russell

    B12 deficiency can cause all the symptoms you describe. 

    I have b12 deficiency too. Your gall bladder has a function for the absorption of b12. If you were already on the low side before your operation the use of nitrous oxide during the operation could have brought it down further to very low levels. 

    B12 deficiency with neuro involvement requires alternate day injections until no further improvement of symptoms then every 8 weeks. You also need a very good folate level to activate the injections. 

    I suspect you need more treatment than you are receiving. 

    Did your gp test your b12 levels before starting injections?  

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    • Posted

      No testing was done to check for my vitamin levels as far as I know. I have had blood work done at this office before so maybe they had those results on file still but idk. 
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  • Posted

    Russell, I don’t know that I have any info to help you, but found it interesting that I also had my gallbladder removed just prior to my GBS symptoms starting.  I had my gallbladder removed and then developed pneumonia that kept hanging on.  I also developed such a sharp pain in my upper right back just to the right of my spine my doctor sent me for X-rays and an MRI.  As all this was happening I had muscle pain, Twitching and weakness starting with one foot and moving up my leg and then the other and then my arms/hands.  I also had horrific electric shock type random pains.  I went from running ten or more miles a day, to struggling to walk.  A neurologist finally diagnosed me with GBS.  I also take B12 and was on Gabapentin for quite awhile.  It’s been 14 months since diagnosed.  Things are better now, but I still have mild symptoms and get tired very quickly.   I thought your symptoms sounded similar to mine and perhaps a neurologist is your best bet to get a diagnosis.  There are many things with similar symptoms and a neurologist should be able to figure it out.  If one doesn’t seem helpful get a new doctor.  Hope you get some answers soon and keep us informed as to how you’re doing.  It definitely helps to talk to people in this group.  
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  • Posted

    Beware not all labs are accurate. If you want to pm me i can give you names. I had two labs miss the Lyme disease. The lab in palo alto ca caught it. I have lyme plus three coinfections. 
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  • Posted

    I’m just worried this could be ALS. The twitching 24/7 hasn’t gotten any better. Thank you all for your replies and depending on how my EMG tests come back hopefully I’ll know more. This neuro I’m seeing sounds like he’s going to do a pretty extensive test, he said he will be checking all my muscles from up in my shoulder to down to my hand in both arms and I’m only assuming he will do the same for my legs. They have me scheduled on two different days for EMGs. Wish me luck everyone, no one should have to go through the worry that they could have an incurable disease. 
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    • Posted

      This happened to me 11/2016. I became ill with numbness of my face and gastroparesis. I was also having weakness in my legs and arms. I went to emergency and my labs were normal exceot low vit d and I had no esonophils. They said virus sent me home. I had massive twitching in my waist to toes at first. Jerking shaking and I went to anothwr ER told they didnt know. Went to my primary who misdiagnosed me 3 times. I had a lot of symptoms but the twitching scared me the most. I went on a facebook group called BFS recovery. Thousands of people there with the same thing. All scared like we were. I had these twitches constantly fir 7 months then they started to slow. I finally saw a neurologist who said I had guillan Barre syndrome but he believed miller fisher because of my facial numbness is how it started. I have improved but my body still gets twitches just not so many and sone days is hardly noticed. I was terrified. I. Had to start anxiety medication and something to help me sleep. I had 7 emg the first year because I couldnt believe my body would just do this without it being a terrible disease. Have the emg and I pray it will be normal. My neurologist neuromuscular neurologist told me he once saw a man who had thousands of twitches all over his body and it wasnt harmful. He says he has seen a lot of his but they have no idea what causes it. I hope they find out and help you and pray it is not als. I know how you feel I thought I had it and sufferred major anxiety and depression. Its been almost 2 yrs but there are days I still get scared and have to remind myself it will be ok. Let us know what your emg results are but know that if it is normal emg that means no als at this time and you may need to repeat the emg in 6 months. As long as you dont develop weakness and atrophy of your muscles you will be fine.
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    • Posted

      I had two neurologist misdiagnosed me with ms. I started the ms meds. That was bad. I had gone to a naturopath after the first neurologist and during my appt i was talking with her about my symptoms. She told me it sounded like lyme. I had my primary dr test for lyme. At the same time i had the second neurologist test my spinal fluid for lyme. Both labs missed it. I then found an llmd ( lyme literate dr). Sent blood to lab in Palo Alto Ca. Came back positive for lyme and three coinfections. I can’t give names here but you can pm me for more info. Did you get a chance to research bartonella and babesiosis ( babesia).   Dr miss 300,000 cases a year just in the US. 
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