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TOPIC: ESA WRAG to support

ESA WRAG to support 4 years 2 months ago #2649

  • jasmine
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Great news Linda

Jasmine xx
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ESA WRAG to support 3 years 3 months ago #3336

  • Nirvana
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Dear Paul,
I was so pleased to read your message. At present I am back on ESA but expect an Atos medical anytime in the future. My Dystonia is positional and only happens upright when I am stressed. When my head is back at any resting angle and when I am lying down it is constant, pulling to the left always. I have clonazepam 2mg at night 20mg baclofen and botox injections and still it continues. I am a single person without support and so it would be great for me if and when I need some backup if I could have something written by Dystonia society because my sleep pattern,(I have not had a night without this for 5 + years) as you might imagine is unpredictable to say the least. I am also on Sertraline 50mg as I had lost the will to live whilst last on JSA. Because people can not see my symptoms most of the time they think I am OK. My G.P. has been told to stay out of my Dystonia situation as he sent a strong letter to my Neurologist because of the state I was in. So you could say I feel somewhat in the middle of a situation where my level of control is not good. Sorry to go on so much but I have not given myself the opportunity to talk on this subject except for the very brief appointments I have with my neurologist, which don't really get me very far as I swap one problem for another :silly:

Thanks once again
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ESA WRAG to support 3 years 3 months ago #3338

  • Tez
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Hi Linda
I was diagnosed with Dystonia, dystonic tremor with myoclonus a few months ago. I am able to work although I have just reduced my full time hours to part time on advice from neuro as I couldn't manage the hours and driving due to muscle fatigue and exhaustion.

I have just applied for a blue badge, don't know whether it will be granted but what is esa wrag ? I have heard of PIP but don't need that at the mo,

BTW I'm Glad you got the desired result for you
Best wishes
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