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Undiagnosed symptoms, help?

Posted , 2 users are following.

meglawton
meglawton

When I was 13/14 I started to get spasms in my right hand and over the years got more frequent. Last year I started to get spasms in my arms and hands and a rushing sensation in my arm and then the spasms and shaking of my legs. Also, I began to feel quite weak in the legs and would struggle to stand for long without support and would just fall suddenly, my legs would give way. It calmed down a bit but came back again a while after. A few months ago I became also house bound, I found walking difficult as I would get pains in my legs after walking for a while and would fall without support. I also began to have vocal tics, it is like shouting random words/noises. This calmed down for a bit, however a few months ago it started again. I have the vocal tics every day now, I get a rushing sensation in arm up to throat then the vocal tic. I still have spasms in my arms and the pain in my legs are nearly every day. I cannot walk without support really and when I can it is such a short distance. 

I have had countless blood tests, MRI's, ECG's and a lumber puncutre with neurology and have been told I will not know the cause or what it is. However, I have been up to a & e 7 times this year. I was at a and e a week ago and the gp told me it sounded like a chronic condition. However, i then went to my GP at my doctors a few days after and she said that it could be a tic disorder and I am going to a mental hospital to see someone at the young persons department. I am waiting for occupational therapy to get in touch. I really need walking support! Also, I in farmfoods and I just cannot do shifts with standing up and I can hardly sit down all the time. I want to leave but would have no income. 

The tics and pains are becoming more frequent and the pain has started in my right arm and wrist, something not happened before, only right. Also I get pains in my neck and foot now!

0 likes, 17 replies

17 Replies

  • ptolemy
    ptolemy meglawton

    Posted

    It does have some of the symptoms of Tourettes but it does sound quite severe. I assume the medics have already discounted that though.
  • ptolemy
    ptolemy meglawton

    Posted

    It does have some of the symptoms of Tourettes but it does sound quite severe. I assume the medics have already discounted that though.
  • ptolemy
    ptolemy meglawton

    Posted

    It does have some of the symptoms of Tourettes but it does sound quite severe. I assume the medics have already discounted that though.
    • meglawton
      meglawton ptolemy

      Posted

      They have not mentioned anything about Tourettes, they mention chronic and then tic and now they don't know. They keep saying they do not know but tell me nothing is wrong, there clearly is and  I am in the right state of mind. I have had some really helpful GP's but it's the hospital I do not find helpful. I try not to google things but I am desperate to find out what this is, it is clearly something!  A close friend suggested tourettes when she saw it but I do not like to think that as my parents say it definitley is not.
  • ptolemy
    ptolemy meglawton

    Posted

    Sorry about the multiple replies, it kept coming up with an Error!
  • mark357
    mark357 meglawton

    Posted

    If you can ask your GP to refer you to a neuromuscular specialist. Don't want to worry you but it could also be CMT (Charcot Marie Tooth Disease) especially if you are getting pins and needles, numbness and if you hold things like a cuppa tea or doing something where you need a steady hand and you suddenly start to shake and it feels like someone is shaking your hand. It is a long shot, but if you go on Google and type in CMT or Charcot Marie Tooth Disease, you will find the NHS site with the symptoms and see if anything relates to you.
    • meglawton
      meglawton mark357

      Posted

      Thanks for your suggestion, I did look and can relate to the symptoms I suppose but I do not like googling anything to worry me to be honest. Is there anyway I can get some walking support although I am undiagnosed? I don't know whether to mention CMT to my GP or not.
    • mark357
      mark357 meglawton

      Posted

      If you go to your main hospital and the neuromuscular dept should be able to help.
    • meglawton
      meglawton mark357

      Posted

      So I can just go the department myself? I thought it had to be referal before even going to the hospital. The vocal tics are getting worse now, like screams shouts I even said the N word sometimes but it does not seem like tourettes. It seems like I look in pain when  I get the tics but I am not, just uncomfortableness
    • meglawton
      meglawton mark357

      Posted

      Also, my neurologist said they have done all tests possible and cannot find anything, especially in the brain.
    • mark357
      mark357 meglawton

      Posted

      It is not so much as the brain, but the nerves. I don't know if this is worth looking into, but have a look at Carpal Tunnel Syndrome as they have some of the same symptoms.
    • mark357
      mark357 meglawton

      Posted

      I don't know if your local hospital has an orthotics dept, but I got myself a wrist support from their. They costs around £4.00 each unless you as your consultant to put in a referral/request for you and they helped with the shaking and tremors. Before I couldn't have a hot drink because of the shaking, but now things are a lot better now. I can even dish out an evening meal without half of it going on the floor.

      These are just ideas for you to try.

    • meglawton
      meglawton mark357

      Posted

      I don't know if a wrist support would help though as it affects arms and legs plus vocal tics and I have been told that now I will not be able to get any support as I am undiagnosed and there is no need for any support. 
    • mark357
      mark357 meglawton

      Posted

      As you wear the supports it constricts the blood flow, blood flow speeds up and helps circulation with the speeded up blood flow.
    • meglawton
      meglawton mark357

      Posted

      Well I will ask but now my toes are like tightening when the tics happen
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