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Numbness, tingling and myoclonic jerks

Posted , 7 users are following.

Ruth44320
Ruth44320

I have been suffering from numbness (more down my left side but can be in my right), myoclonic jerks and twitches for about 5 months. At first I thought it might be due to benzodiazapam withdrawl as I had been on a low dose but I managed to come off them. However nearly 2 months later the symptoms were worse. I am now back on 2mgs of diazapam at night as it is the only drug that gives me some respite. I will tapour off them slowly if I get an all clear from the MRI.

I am due an MRI scan next week and a neurology appointment on 4th February. What I have found really difficult is the long wait for the MRI and neurology appointment. It seems if you are not classified as urgent you have to wait on the never never for the NHS. Anyone else out there suffering with the uncertainty of a diagnosis, unpleasent symptoms and long waits. I have ended up in A&E 4 times, numerous visits to the GP and out of hours service only to be told it's all anxiety. Anxiety may play a aprt but I don't beleive it is the whole story.

Anyway would love to talk to someone.

0 likes, 6 replies

6 Replies

  • charice88
    charice88

    Posted

    Hi I have has the same condition that was diagnosed 2 years ago as an anxiety disorder. It subsided for a few months then I had another episode and then it was gone again. Recently I've had another relapse and I had to go home from work. I went to the doctor and they said it was nothing serious as I also had pains in my chest that made it difficult to breathe. I went back to the hospital as they were getting worse and they said your GP has to refer you back to the hospital (which not even they understand) and to any further consultants.

    I was then told it may be a Tic disorder not like tourettes as there are no motor sounds involved. I take propranolol at the moment for migraines which was supposed to be helping the 'condition' but this episode has lasted 4 days now. I have to go back to the neurologist and possibly see a psychiatrist. It seems they are just guessing at the moment until I'm properly diagnosed.

    They suggested I take time off work, but staying home won't make it any better in my opinion.

    Not sure what to think now...

  • Ruth44320
    Ruth44320

    Posted

    Hi there Charice,

    Thanks for your reply. I am sorry to hear you are going through all this. It's horrible isn't it. I've had all those problems of being told I must go back to the GP and my poor old GP being as stuck as I am. Fortunately, I have a lovely sympathetic GP who has written and phoned the neurologist to try and get me an appointment. I've now had the MRI scan and am waiting for the follow up appointment.

    In the meantime I've just been put on Sodium Valporate which (and it's very early days) seems to have calmed things down.

    I really feel for you. I wrote a whole piece out for my GP about how hard it was to live with a mysterious illness, especially one where you twitch and jerk. I said I do not meet the needs of the system. The system does not meet my needs. I guess you are in the same position.

    Lots of love. let me know how you get on!

    Ruth 44320

  • Wee_karen
    Wee_karen Ruth44320

    Posted

    Benzo withdrawal is hell on earth. It can last for years and almost drive you mental. I was on Librium 25mgs for two years. Taking up to 13 tablets a day. The doctor knew this but was happy to keep dishing them out. That's very unusual for the uk. I'd had 2 nervous breakdowns & this was after the 2nd one. (sexual abuse as a kid & sexual harassment at work). The tablets stole 2 years of my life. They were always dispenced in to a pill bottle with no information about them. Thankfully one day the pharmacist put the information booklet in with my script. I couldn't believe that the longest time to be on them was four weeks. The tablets are more addictive than heroine and also have worse withdrawal symptoms. Going cold turkey could kill you. Tapering was advised. I knew that tapering wasn't for me. Going cold turkey was horrific & at times I really wanted to give in but somehow I made it through. I could barely walk for 6 months and it was another 2 years before I was back to myself. Benzos should be banned. They are pure evil 😈. I wouldn't advise cold turkey to most people but I have other addictions (clean at the minute) and that was the only way for me. If you're doc suggests going on any Benzos do your research & if you have an addictive personality stay well away for your own health and sanity! Xx
    • Whirlieg9
      Whirlieg9 Wee_karen

      Posted

      Glad you recovered Wee karen but I am a bit confused, 25mg for 2 years yet you say you were taking up to 13 tablets a day? This drug comes in 5mg, 10mg and 25mg strengths, so what dose were you taking if you were taking up to 13 tablets a day?
  • Heather2612
    Heather2612 Ruth44320

    Posted

    I had all these symptoms and was diagnosed functional neurological disorder. I have since found out that my symptoms were in fact caused by neurogical b12 deficiency. I would urge you to get the b12 test and look up symptoms of neurological b12 deficiency. 
  • amanda08944
    amanda08944 Ruth44320

    Posted

    I know this is an old post, but I'm very curious what you were able to come up with. Are you still having this problem?

    I'm currently having the same issue. My doctors are stumped. Currently waiting for a referral to a neurologist, and hopefully an MRI.

    This jerking and twitching seemed to start during a severely stressful time in my life. At its worst it happened every minute or so. It has since calmed down tremendously, but still happens randomly -a cpuple times throughout the day, and ALWAYS when I'm tired or falling asleep.

    Hopefully this comment finds you well. I'd love to know what you found out.

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