Jerky movements, tremors, numbness

Posted , 3 users are following.

I have no idea what is going on. I am 35, I have undifferentiated connective tissue disease and non autoimmune hyperthyroidism caused by a toxic nodule. It's under pretty good control. The last couple of years I've been experiencing increasing tremors and twitching in mainly my face and my thumb and middle finger, tingling and numbness in my hands and feet, it often feels like heavy bands around my wrists and ankles, involuntary jerks like shoulder shrugs at random, and unsteadiness.

I had a nerve conduction study in my hands but it was fine. The hands and feet numbness episodes often last all day, the most recent one though I had painful tingling in my right hand and a patch of complete numbness. It stayed for hours. My tremors are jerky, normally in my hands, left worse than right by far, intermittent and induced by exertion, like using shears to garden for a few minutes. Usually Only present when flexing muscles.

. Some days my whole body feels jerky, like I can't make smooth movements unless I really concentrate. Like moving my head up an down will be stuttery and jerky. I seem to have issues in my legs, if I try to lift them from lying down, it's very difficult and I get tremors in my thighs immediately. I was also recently diagnosed with atrial flutter/fibrillation. My endo says the tremors and such are not thyroid related, my rheumy says they aren't autoimmune related, my new movement specialist says they are probably dystonic tremor but I'm in a waiting list for a brain mri. I take cbd which helps somewhat. But I'm scared what it could be this time and I don't like how it's progressing. I'm just looking for ideas.

0 likes, 10 replies

Report

10 Replies

  • Posted

    Get tested for lyme and coinfections. Beware not all labs are accurate. Do homework on labs. 
    Report Reply
    • Posted

      Not every thing is coin infection and Lyme Hun but it’s woth looking into I’m even going to check . My doctor has screwed up lots s**t his office it’s getting worse . Might have to get new doctor if it’s not my prescription it’s my referrals . 
      Report Reply
    • Posted

      The labs hospitals and drs use are not accurate. It has been proven time and time again. Cdc has screwed that up with their politics and ignorance
      Report Reply
    • Posted

      I agree took them 10 days after going in numerous time every day was getting sicker sicker till as I told u I calapsed life support still 10 days after in and out of comma finally they do a spinal tab the worst gbs every from head to toe . I’m still sick after 3 years two months got sick 14 times  just this year . Now have lump on bladder  and my doctor is sctewing up with my mri and cat scans cause I had phnamonia crushed lung I’m ok with that now but even my prescription screws them up to this the worst year I’ve had with him on every thing . So I got do is basically get new doctor before I die cause still numb  lower leg sand paper feeling my hand lately tingling again bit I think I have cdp think that’s the name . I just started eat more fruits and veg and taking probiotics
      Report Reply
  • Posted

    Hi Hun I have not been on for few weeks but just came on to check on things basically read your story. I’ve been introduced by a mother her child around 12 years old in wheel chair simulator stuff has to do with his auto ammune . Did they check for ms or hotchkins disease or any of that? I’m so sorry to hear you have to suffer this way . Also have they run any more test like blood work when is ur mri taking place they should do cat scan also. 
    Report Reply
  • Posted

    I was tested for Lyme when I first got ill, negative, I have my regular autoimmune panel of blood tests and that includes infection markers, nothing is especially elevated. I've not been checked for ms, I think they figure it's unlikely with uctd/lupus to be both. But it's something they are likely to see on the scan anyway. And the scan could be months. The waiting lists for such things are huge. It just leaves me worrying.

    Report Reply
    • Posted

      I had two labs miss  my lyme.  One starts with a q and the other starts with a m. Went undiagnosed for 8 years. Misdiagnosed with fibromyalgia, chronic fatigue and then ms. There is a lab in California that is accurate.  I tested positive for lyme and three coinfections.  The other labs missed. Pm me if you want more info. 
      Report Reply
  • Posted

    I have very high positive Ana and a positive anti ro which led to the current diagnosis. These are antibodies which are positive in lupus and sjogrens. I can't see me picking up Lyme since then. I don't do a lot of activities, in the UK, where I might pick up Lyme. Unfortunately on the NHS in the UK, its hard to get anywhere with doctors. They keep telling me that each new thing is unrelated to the last one. And I'm just getting sicker with new things. Like the hyperthyroidism which suddenly appeared almost 3 years ago with a giant growth on my thyroid. And it's not even autoimmune. Every year is a new diagnosis. And it's scary. Really scary.

    Report Reply
  • Posted

    So what are they going to do then hun ? My sister lives in long beach Florida I know cost lots to see these doctors ? You got get some kind answer for what’s going on . God bless you id like to hear your ok soon on what’s happening.
    Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up