Jerky movements, tremors, numbness

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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.

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  • 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. 
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  • 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.

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  • 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.

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  • 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.
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