Discussions By Condition: I cannot get a diagnosis.

Please help me

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: AlexTA
  • January 1, 2009
  • 07:40 PM

Hi, I know ir is long, but I am desperate so please read.
I am a fourteen year old girl who for over the past two years has experienced extremely severe muscle spasm in both shoulders. This all first started when I subluxed my left shoulder and it shifted out of place and into my back. I went to a&e and they strapped it up and made me physio appointment, I had pyhsio for 3 months and there was no improvement. Then one night I was moving my arm and it subluxed except every time I put it back in it just fell out again. So I went up a&e and thy tried for hours and couldn't get it to hold. The next morning they tried under anesthetic and when I woke up it subluxed again.A few days later my shoulder went into a rapid, severe spasm where my shoulder subluxed, then went back in,then subluxed and so forth. About a month later, I had a nerve block put in and when I woke up from my mid arm downwards my arm was paralysed, the doctores didn't know why and it is still like it today. I then spent six months in four hospitals having had done, botox, a nerve block, and intense physio and occupational therapy. Then, in Januaray last year my right arm got poulled back and my right arm subluxed and straight away started the severe spasm. No doctors know what to do, I don't see any doctors anymore and I am left like this. This spasm are excrutiationg, I barely sleep, and my shoulders are affecting everyone around me. I have tried several drugs at the moment I am on, gabapentin, baclofen and codiene.

If anyone has had anything similar or knows of any doctors who may be able to help in the us or england please reply.
Thank you

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8 Replies:

  • What physical activity were you doing when this all started? Have you tried acupuncture? DOM
    acuann 3080 Replies
    • January 1, 2009
    • 11:15 PM
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  • Hi, thank you. I was playing football and I fell on an out stretched hand. I tried acupuncture for two months, it was then stopped when no one felt it was making a difference.
    AlexTA 3 Replies
    • January 1, 2009
    • 11:27 PM
    • 0
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  • AlexTa, I am devastated reading your story. I wish I had a magic wand and could help you. Right now. But I don’t. I can though recommend a good British site http://www.hypermobility.org/They mention a couple of clinics in England specialized in patients with hypermobility. They should know more about it than ordinary doctors. Hypermobility gets better with age. I keep my fingers crossed for you. Good luck, sweetie!
    Felsen 510 Replies
    • January 2, 2009
    • 03:48 PM
    • 0
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  • Hi, thank you. I was playing football and I fell on an out stretched hand. I tried acupuncture for two months, it was then stopped when no one felt it was making a difference. Did you go to an acupuncturist or did a doctor or other therapist treat you with acupuncture? There is a difference in training...were you prescribed herbs? DOM
    acuann 3080 Replies
    • January 2, 2009
    • 03:58 PM
    • 0
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  • It seems that you are a surgical candidate.
    richard wayne2b 1232 Replies
    • January 2, 2009
    • 04:50 PM
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  • You might try Valium for a muscle relaxant,and you should be on NSAIDS.
    richard wayne2b 1232 Replies
    • January 2, 2009
    • 04:53 PM
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  • Hi acuann, I had acupuncture at UCLH, in London, thank you for taking an intrest, I really do appreciate it.
    AlexTA 3 Replies
    • January 2, 2009
    • 11:23 PM
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  • Hi felsen, thank you for helping, once again I really appreciate all the advice. I will check out the website as it is clear I am hyper-mobile and this could help, thank you so much,Alex
    AlexTA 3 Replies
    • January 2, 2009
    • 11:26 PM
    • 0
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