I'm Diagnosed?! | RSD and Me
Okay. Check. *clap clap clap snap* Hello! I chopped all my hair off cause I was feeling not the best. However, right now I am feeling the best. I'm feeling a real good best! Lots of y'all know, I've talked about it fairly significant amount- that I have been undiagnosed for almost two years. But, I came back from the doctor yesterday actually and I have a diagnosis!! I am no longer undiagnosed, and that makes me SO happy. It's just like- I don't know my mind is just kind of blow but also not surprised because this is the diagnosis I've been fighting for for at least a year now.
Pretty sure that that's what I had for a long time and doctors just kept dismissing it, saying there was no evidence, etc. SO, I have been diagnosed with Complex Regional Pain Syndrome Type 1. Formerly known as Reflex Sympathetic Dystrophy. Some doctors still prefer that term, some doctors do not.
It's kind of controversial but it's just a name. That feels really weird saying that out loud, that I have a diagnosis. It's in my legs. It hasn't spread to the rest of my body because the initial injury that we believe caused it was in my legs. Specifically my knees.
I still have lots of pain, but I also have muscle loss. We've talked with my doctor and things of that nature and we're going to try a nerve block in one leg. That should, if it works, get rid of the pain. However, because we're so late in this stage there's really nothing we can do about my muscle loss. It might keep going, which is kind of terrifying to me, because I've always been like a really active human being. I can continue physical therapy and stuff like that. So, with that being said we're just gunna keep moving forward. We're gunna try the nerve block and that should be in a week and a half, hopefully, if it doesn't get approved by insurance withing 7-15 days then there just going to move it to a different date which is no biggie.
I'm just kind of like incredibly grateful to this doctor. I found her through the lovely internet. I just searched doctors with specialties in CRPS. She came up and she happened to be down the street, so I called and made an appointment.
I was there for like 3 hours, but she listened to everything I had to say, and by the end she was super nice, she was super accommodating. She believed me and every crazy thing I had to say, every crazy doctor story and she didn't doubt me at all. I feel so grateful for that. I still am going to be fighting for those that don't have a diagnosis because I am incredibly lucky to have only been undiagnosed for 2 years. I say "only" however, he average time is like 3-7 years.
I know several people and it too over 7 years for them to get a diagnosis, or they're still undiagnosed and it's been way way way too long. So, it's not fair for people to still be undiagnosed for so long, and have so many doctors gaslight them and tell them that they're lying. I had several doctors shove me out the door because they though I trying to get attention.
I would absolutely kill to be able to tell them, "You need to listen to your patients." In the end it doesn't matter how many years of medical school you went to, how great your own practice is, whatever. In the end the patient knows they're body best, and if the doctor isn't listening to them then they're not gunna get anywhere. I understand that there are some doctors that don't want to have that one patient that they don't know- they don't know what they have, so they just give them something else. That's awful. I would much rather have a doctor say "I don't know what to do, I can give you recommendations to other doctors." Then for them to just give up.
That's just- it hurts. Anyway, I think right now I'm just kind of taking it all in. I will be making more videos on CRPS/RSD now that I now it's something that I have. If you have any questions you want me to answer about CRPS/RSD, what my experience has been with it, stuff like that: leave them in the comments and I will answer them in a later video. I'm Abby Sams, I have CRPS and rejoice in the day and be glad in. I will see you later! Bye!!.
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