Dear All

A while back I posted with some questions and a request for help. In addition to the ususal symptoms, my CRPS has given me the endless joy of a severe movement disorder that affects my whole body. The docs seemed in their infinite wisdom were testing for all sorts of other neurological problems and telling me CRPS couldn't present like mine. No surprise then that after doing a bunch of tests, they have drawn a total blank on finding any other neurological disorders that could be causing it. I have had CRPS for 13 months now.

I have previously described my movement problems and I don't want to bore you all but I have severe muscle spasms, dystonia, weakness, temporary periods of paralysis, tremor, spastic limb posturing, balance problems, problems initiating voluntary movement, myoclonic jerking, startle reflex and so on. I can barely walk at all now and I have to use either crutches or a wheelchair. None of this is caused by pain-related disuse and it affects my whole body from my toes to my face and neck.

Some of you were kind enough to reply to my previous questions about movment problems. I am gradually working through all of the psychological and practical issues of coming to terms with my disability. I know that there is a lot of chat out there about people with CRPS who have an eventual remission from their various symptoms. I am interested to know whether any of you out there have experienced or heard of anyone with such severe movement problems as mine having an eventual remission (without treatment for that aspect of the condition). There are no plans here to try and treat my movement problems or give me any drugs to lessen the symptoms.

I never like to give up all hope but I think it is important to be realistic in order to come to terms with what could be a permanent and severe level of disability. We don't have experienced CRPS specialists in Scotland and the supposed CRPS specialist centre in England said they hadn't seen CRPS present before with movement disorders like mine!!

Thanks everyone!