Issue with the nervous system, not sure what to think.

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Just over a year ago, I experienced hemifacial spasms/dystonia but it was mainly affecting my mouth (pulling it to one side). But now, it is affecting my eye on the same side and my chin.

Also, I have been experiencing pins and needles, numbness, muscle twitching and "internal vibration" in my leg. The pins and needles and numbness would just happen to one side of my body. Most of the time, my legs feel like they have been weighted down with a ball and chain, making it difficult to walk. Most of the time, I struggle getting up from sitting in a chair. When I do any sort of writing, my hand would cramp up and spasm, making my hand writing very shaky looking. Recently, it is extra easy for me to feel too cold or too hot, making it extremely difficult to regulate my body temperature. After these symptoms had happened, my chronic fatigue started to get worse. 

I do have very mild anixety, it never affects me unless I get specific triggers as I have PTSD. I do worry as much as the next person does, maybe a little bit more. 

At first, it was believed that it was stress that caused it but now the professor I see is now very concerned that the dystonia is still happening. I have seen a therapist and my last appointment is tomorrow. However, none of the therapy has made an affect on my symptoms at all. 

I have no stressful events happening in my life for the past year or so. I have no work to stress me out. I am in university doing a course I always dreamt of doing. I am also getting married.

I am just extremely baffled and want to know if anyone else has had the same or similar symptoms as me and what their diagnosis are. 

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4 Replies

  • Posted

    This is interesting, you saying about pulling your mouth to one side and now started with your eyes as I woke up 4years ago with a one sided mouth,one eye I couldn’t open and the other I couldn’t close,my head is bending to the left all the time so my ear almost touches my shoulder. My daughter took me to hospital as she thought I had a stroke but after an overnight stay the doctor said it was Bell’s palsy and would clear by six weeks,4 years later it is still the same and get awful muscle twitches and twitches in my limbs,fatigue is awful,used to see a neuro pysio who thought it was dystonia but nothing was done. Was sent to a neurologist who was going to send my for a scan,I didn’t go though as he had told me it was through taking 2 prescription drugs that shouldn’t be taken together yet when he wrote to GP he said he thought it was all in the mind so afraid I didn’t go back as didn’t trust him. Unfortunately I have no answer for you but do hope you find out what is it and sooner than 4 years,I even have to have all my food puréed as the SALT that came in said my larynx wasn’t working properly so everything a chocking hazard,all my drinks have to be thickened as well 

    • Posted

      I hate when doctors act like that. It really winds me up when they said it's all in your mind but how can it be when you are getting physical symptoms that severe.

      The only fear of mine is that I will never get to the bottom of it and find out what is going on. I'm due to see the neuro doctor at the beginning of October. I just feel like I am going to get referred back to my GP without any extra tests done. The only scan I had done was a brain MRI that was a day after the symptoms started.

      If I were you, I would fight for an actual diagnosis. Here in the UK, I would make a complaint to the NHS. Hopefully you will find answers too.

  • Posted

    What I couldn’t understand was why the neurologist was telling me I had brain damage because of taking these tablets together over a long period,I have been on them years, and how I would have to be weaned off of them so much at a time yet when he wrote to my doctor it was a totally different response and I am still on the tablets and wondering if anything else will happen,I am in the UK as well and not the first time that I have been messed up .

    I really hope that you get your answer in October and that it comes round quickly for you,it’s awful just being in limbo

    • Posted

      That is odd, I would question that to be honest.

      I just have the fear that doctors will say its not real and that it's all in my head. When I speak to my partner about it, he says that "oh I get that sometimes too" Ive told him about new things that are happening and I get no real response. I've even been called a hypochondriac.

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