Suffering constant muscle twitches and spasms. Please help or share STRUGGLING

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Hey guys was hoping someone may be able to advise that's gone through something similar. So 14 months ago I developed a funny feeling in my left foot arch of constant twitching and feeling odd sensations in my foot. This then progressed to muscle twitching in my leg constantly not being able to sleep the only thing that helped was to keep moving or hold my foot. Now recently I have developed wide spread muscle twitches and spasms in my left and right legs arms and face. Pretty much all over. My fingers in both hands twitch as do my toes. Sometimes for hours on end. Sometimes feels constant. I have twitching on my face my lips etc . I have seen a neurologist who performed an emg and brain scan which was clear and he put me on propranolol for essential tremor and discharged me telling me it won't get worse. Now 6 months on from EMg and 3 months since neuro appointment the twitching seems to be spreading all over. With occasional leg tremors and hand tremors.

Has anyone had anything similar I'm littrally losing my mind with all of this and my gp thinks I'm crazy. He won't refer me again until I've been on propranolol for 6 months at least. Would love to hear from people who may have similar symptoms. As I'm littrally losing my mind.

thanks for reading

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  • Edited

    Hello Mo.

    I can relate and I share your concern and anguish.

    I have all your symptoms and more, have seen 2 neurologists a rheumatologist, orthopaedic consultant.

    I had an MRI of brain, neck, spine 2021, all clear.

    Symptoms persist, body wide fasciculations, tremors, cramp, loss of dexterity, pain throughout my muscles and joints, body jerks to name a few. 1st Neurologist said it was muscle tension through anxiety May 2021.

    Saw a rheumatologist, he asked me what I thought it was, my Dr had hinted at suspected fibromyalgia, so the rheumatologist printed me off a document from the Internet and said that's what I had, July 2021. I paid £200 for the privilege. He was arrogant, rude and bored throughout my consultation.

    Symptoms persist and so I went private again (as were the previous consultations at considerable cost to me), saw 2nd neurologist, he examined me said no sign of muscle loss or fasics. He was lovely and sent me for EMG/NCS to "put my mind at rest" All came back clear. Lovely as he was, I felt dismissed by him.

    That was May 2022. I'm now waiting to see the neurologist again due to me requesting another referral through my GP/NHS. She was less than interested at my last appointment. That was Dec 2022.

    All of my joints, crack and tendons snap. I am now suffering a 2nd frozen shoulder in 2.5 years. Body wide twitching, muscle loss in my thenar. Fine motor skills not as good as they once were. Swallowing is challenging with lots of reflux. I had a barium swallow Nov 21 which showed esophageal dismotility. Was prescribed some medication that didnt make any difference and told to increase my anti depressant from 50mg to 100mg.

    It all points to something nasty but I'm being told its Fibromyalgia, menopause, B12, hypothyroidism, anxiety.

    The reality is, nobody really cares. That is why I find myself here trying to share my experience in the hope you might feel better and not so alone.

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