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Health getting worse but no help?

Posted , 3 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! It is also as if my toes are tightening and curling up when i get the shakes.

I am 17 years old and the pain in my legs after shakes are getting worse, it really is affecting my walking, I do not want to be housebound again. Anyway I  can get walking support?

0 likes, 6 replies

6 Replies

  • mrsmop
    mrsmop meglawton

    Posted

    Hello Meg, I'm sorry you're having such a rough time.  Can't your GP help with walking support?  Perhaps put you in touch with Social Services or something like that.  Where are your parents?  Do you live at home?
    • meglawton
      meglawton mrsmop

      Posted

      Yes I live at home, I am waiting to get assessed by occupational health and my GP said crutches but I cannot do that if I cannot use my arms properly as well. 
  • sandra2468
    sandra2468 meglawton

    Posted

    Megan,

    Really sorry to hear your story.

    Have you seen a neurologist?

    Here in the UK we have the National Hopsital of Neurology.

    You probably have as you said you have had ECG testing.

    There are many viruses that cause problems.

    You have been very ill I sympathise.

    Just a thought try to keep OFF starch.

    AS suffereres get help coming off starch.

    I realise it is hard to do but worth a go.

    You may have an extreme allergy and going to a mental hospital in my mind is the wrong decision.  You will be put on anti-depressants which you will never be able to come off.  My cousin had eperience of these drugs.  The docors refused to help him to come off them in the end.  They can cause more problems.

    Ty the STARCH diet in the first instance.

    If your read forums many people with AS have had considerable relief with this diet. I realise it is hard.  There is also a drug which in fact can also help this 

    ANKYLOSING SPONDYLITIS condition.

    It can become a very debilitating condition worth a thought.  

    Has your back been scanned MRI  CT SPEC?

    You may have this condition.

    Best Sandra

     

     

    • meglawton
      meglawton sandra2468

      Posted

      No I do not think I had a back scan MRI, only head and neck. also my neurologist said it is just stress. 
  • sandra2468
    sandra2468 meglawton

    Posted

    Hell;o Megan,

    Yes stress can make everything worse I  agree.

    However if you were able to have MRI of back.

    If the back shows fusing of spine you are likely to have AS.

    There is a blood test for AS however it is not always positive, also worth a go from your doctor. Look it up on the net.

    Anything is worth a go,

    Good luck,

    Sandra

    • meglawton
      meglawton sandra2468

      Posted

      The neurologist thought it all, starting from when I was 13, was stress.

      I did look at AS but I don't think I can relate to any symptoms or maybe I didn't check properly.

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