Hi GymJunkie,

First of all, I am so very sorry that you have to deal with all of that . I am also from England and I suffer from RSD and Movement Disorders (I developed them when I was 12 years old, I am now 13).

I have CRPS Type 1, Dystonia and really bad Myoclonic Jerks. My Doctors also told me that they had never seen CRPS/RSD present in the way that mine does, when I first developed the Myoclonic Jerks, My PM Doctor just spent hours watching me and admitted that my case of CRPS is the worse he has ever seen. I have had a lot of interest off of different Doctors about my case of CRPS. Most of the Doctors are really interested in my case and I have even had a lot of videos taken, some of my video's have been taken to an Internation Conference about CRPS. Whilst I am happy that my case of CRPS is getting the message across to other doctors, it is also really scary knowing that no one has seen a case like this before (in the UK anyhow).

I have just been to GOSH (Great Ormond Street Hospital) and have completed there 3 week intense Physiotherapy program. I spent 13 months wheelchair bound and I am now able to work short distances with crutches, whenever I try to walk long distances though my leg gets really bad and painful and the foot rotation (dystonia) gets worse. My Myoclonic Spasms haven't reduced any and neither has the Dystonia ... I have now been told that my only options left to try were either Casting or Botox - both of which you are not supposed to do when you have CRPS but my Doctor feels that it is my only chance of getting somewhat better. In a few weeks, I have to go into hospital, put under General Anasthetic and have my leg manipulated and a splint moulded to the shape of my leg. Hopefully the splint will work but if it doesn't I will have to have my leg casted or something more invasive done. I will let you know how the splinting goes in case you ever feel that it is something to look into to try and help you.

I have tried a LOT of medications to try and resolve some of the spasms. The meds that I have tried so far are: Baclofen, Propranolol, Diazepam, Kenadrin and many, many others. Non of the meds have had any affect on me and most of them made me really sick (probably because of my age).

Here is a link to a video of the spasms in my leg:
http://uk.youtube.com/watch?v=qE_OwuilOew
http://uk.youtube.com/watch?v=xIXakErNBpE

I hope this helps, if you have any questions please feel free to ask me ... I have been there and got the tshirt unfortunately!!

I wish you the very best and hope you get some answers soon

Alison