Quote:
Originally Posted by katric511
My brother is 25 yrs old, he has been in and out of the hospital since he was 19yrs old when he decided to join the army. He was stationed in Seattle, when he got a virus called Guillain-Barre syndrome, after that went away he developed Complex Regional Pain Syndrome on his right leg. He has been prescribed so many different medications to control the pain but none are helping. They have given him tranquilizers to knock him out for some surgeries and those don't help..Its to the point where the doctors are starting to worry because the pain is getting out of control and they are not sure what to do. They know that it is possible that all the meds could affect his insides..He went back to the hospital three days ago, he started throwing up everyday and he barely has an appetite. I'm not sure if its the medication that has also changed his personality. He's not depressed or anything like that but he has changed to where he is acting like a child calling "mommy" and laying with mommy and asking for toys for his birthday and for Christmas. I don't know what will happen, we are all scared and my mom has been stressed out, to where she's getting sick ulcers, kidney stones. I don't want to think about the possibility of losing another brother..
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katric,
I'm so sorry about your brother! GB is a tough one, and then CRPS, this is a tough row to hoe.
You need to find doctors who are well versed in dealing with the RSD/CRPS. A university hospital with a good neurology dept is a good place to start. Neuro's can be funny though, big ego's. Call, ask for the 'Cheif of Neurology', and give him a short interview on the phone. If he can't give you five minutes, he's not your guy, nor does he have anyone on his staff.
This may require more than one call..
Go to
rsdsa.org
they have a doctor finder by zip code, but the calls are the best way.
We have a Triangle of care for CRPS, and one of those is a good neuro/pain doc to handle the medications. It sounds as if this is still a weak spot.
Next, psych care! And, this seems as if it's being completely ignored! Maybe your mom should go too, but he needs a psychiatrist that deals with chronic pain patients. (usually, a good pain doctor will know one of these).
Then, excercise. This is a 'use it or lose ' it disease. He's got to get his pain under control, so he can still move around!
I've had this for 28 years, and it's full body, along with a good handful of other ailments.
Good care is tough to find, when you do, respect it. I urge you to take these steps starting with a good knowledgeable doctor who knows CRPS! There are specific steps that can be taken, to hold off it's spread for as long as possible, hopefully forever!
I'll keep your brother, and family, and yourself in my prayers! I too, think it's great that you are looking out for your brother!
Pete