Darla's Story

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From: ksumom (Original Message) Sent: 11/25/2008 5:03 PM
My name is Darla Milligan.Iam 48 years old and I have had RSD for 8 years now.I used to work taking cre of handycapped people.The first time I got it I has helping a man to get on the tolit and he started to fall and I cot him with my right hand and I sprained my wrist then he turned to RSD.My doctors were able to get it into remision but since the one I was seeing at the time didn't know that he told me that it was gone and that I was fine.So I went back to work .Then when I was tranfering a young man from one shower chair to another I felt my right wrist pop and the RSD came back right away and this time they couldn't get it to go into remishion.Now it has moved to my right arm,shoulder ,neck back and both my legs and feet and has started moving into my left hand.But I am fighting to keep it out of my left hand.I was very lucky that the doctor that I was sent to new what I had so I didn't have to go what a lot of people went threw. But he was not a good doctor for people with RSD when he foud out he couldnt make me better he refused to see me any more.But as time as gone on I have had some REALLY bad doctors.But I was very lucky because the social security sent me to a good doctor and I was able to get him to be my doctor.But that has only been in the last year.



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From: byrd45 Sent: 12/5/2008 9:34 AM
Hi Darla,
Thank you for sharing your story with us. How long was your RSD in remission before it came back and how did the doctor get it to go into remission? That is so lucky that it went into remission the first time like that. Do they think because it went into remission once maybe you have a higher chance of it going into remission this time at some point too? I hope that is possible for you but if it isn't at least you finally found a decent doctor. That is so important when you have RSD. If you would like to add his name to Our Docs board then other member who may be looking in your area can find a good doctor too. It's a great way of helping each other if you would like to share, but purely voluntary. I'm just so glad that social security sent you to someone knowledgeable.My RSD has kept spreading since I first got it and I now have full body RSD and internal involvement as well. I used to get really upset when it was spreading ...I felt like a bomb waiting to go off. It was just horrible and when they finally told me I had full body RSD I was relieved. I know that may sound weird in a way but I stopped worrying where it was spreading it just didn't seem to matter anymore since it was all over now. I didn't lose hope as you might think I found understanding with my own body. I came to realize that RSD spreads it is the nature of the disease. If they don't put it into remission then it is going to spread but that doesn't mean I have to live in fear of it. I have been thinking has been fine ever since and notice the spreading at times but don't let it bother me anymore. Now I am going through Ketamine treatments to help stop the pain and symptoms of RSD. I had tried this before and you can read more about it in my story and past discussions too. The treatments were interupted by a blood clot forming against a port they were using for the treatments. That was about two years ago now... I had a new series of treatments in October and am waiting for them to set up the next series so hopefully that will help me even more. Are you getting any types of treatments to keep the RSD from spreading more in your left hand? Hopefully they can stop it from going in your left hand and maybe with the right treatments could push back some of the other symptoms you are having in the other areas to relieve some of your pain. I hope so!
Love,
Robyn