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TOPIC: A 'Backwards' Case of Dystonia?

A 'Backwards' Case of Dystonia? 1 year 10 months ago #3854

  • Dawnapollonio
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Hi All I totally recognise all these symptoms. I was diagnosed with cervical dystonia almost 20 years ago. At the time my neck just pulled back but it started with tremors when resting. It has since changed, my neck is pulled to the left but I also have problems with my legs, the messages to my leg muscles are not working and I started with spasms in my left foot and my legs are very shaky. Walking is a nightmare, my neck won't stay straight and I have to try and tell my legs to pick up!!!
I have struggled with sleep for many years, as soon as relax and can feel my body shaking and its very difficult to get my neck comfortable but I started taking Pregabalin and Baclofen in December and they make me sleep, which is wonderful! I had Botulinum injections for over ten years until I became immuned, so 6 years ago I had the Deep Brain Stimulation operation, unfortunately it hasn't worked like I had hoped as my Dystonia is still progressing. I am due to have the operation again sometime after April, got to give it one more go. Hope that's s is helpful.
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A 'Backwards' Case of Dystonia? 1 year 10 months ago #3855

  • rka
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Dear Dawnapollo

I can't describe how helpful your message is. It confirms that what I try to describe actually exists....when suffering all the symptoms and then you are not understood/believed/acknowledged by those around you it is so disheartening and debilitating. How do you find baclofen? I take pregabalin. I too find my muscles in legs arms and feet numb/ burning sensation.

Thank you so much for your information.
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A 'Backwards' Case of Dystonia? 1 year 10 months ago #3857

  • Dawnapollonio
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Hi I am happy my message helped. I cant really say baclofen is doing much, I take it at night with 2 Pregabalin, I sleep really well but I still get the pins and needles and numbness. Just having a good night's sleep is making me feel so much better as haven't slept for more than 2-3 hours in years. I just hope the DBS operation works. It is horrible illness, people really don't realise how painful it can be but apart from my neck pulling, I look really well.
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A 'Backwards' Case of Dystonia? 1 year 9 months ago #3892

  • rka
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Thank you dawnapollonia - it is interesting to note that there have been 1173 views of this subject of backwards dystonia since lorensul first wrote about it.
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A 'Backwards' Case of Dystonia? 1 year 8 months ago #3926

  • islandhealer
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I have never heard of backwards dystonia?

However I can never relax. Keeping still is almost impossible and I have to be moving all the time. Sleeping is a nightmare
as I can never get comfortable or keep still. It doesn't matter whether I lie on my side or back its so painful. Then my legs will start with a crawling sensation and I have to keep moving them.

I wish I could buy a rocking bed!

The only thing that helps is heat. I always have a hot water bottle on my neck or a heat pad at night.
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A 'Backwards' Case of Dystonia? 1 year 8 months ago #3927

  • islandhealer
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Dawnapollonia

I just read your post. I was told to try DBS as there was nothing more they could do to help me.
However my mum died just before the appointment and all the emotional upset I had to cancel.

I was just too scared to make another appointment as I'm not sure I have any strength left to
cope with the operation.

I'm sorry it never worked for you and I hope it helps the second time. I just wondered how you
managed going through it, if you don't mind me asking?

Thanks
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