Results from being misdiagnosed - Reflex Sympathetic Dystrophy Message Board

rayefaye · 02-05-2007, 06:45 PM

What happens when they misdiagnosed your condition? The consequences results can lead to permanent disfigurations to limbs and permanent disabilities that can't be reversed. That's what happened to me, it took 15 years of suffering before anyone would believe that something was seriously wrong and by the time someone finally figured it out, my left arm was permanently left disfiqured. It all got started when I had a very bad car wreck when I was 19. My injuries consisted of the turn signal going through my left hand, and I mean all the way through it, it broke my right arm into and it cracked my pelvis in two different places. First, when the turn signal went through my hand it left a hole in my left hand and they remove part of my knuckle in order to close up the hole and pull the skin over it. Second, it broke my right arm into with the bone almost breaking throught the skin and it in turn severed the sensatory nerve in my right arm. My pelvis was cracked so therefore they didn't put me in no cast but it was cracked all the way up to my spinal cord and leaving a bone chip inside. Which I feel like at some point it hit a nerve inside of my pelvic area.
That was over 23 years ago, the first problems I started having started about three years later. So at first I had thought that is was just arthritis because it runs in my family, so therefore I took something for arthritis. But that didn't help, at one time I was taking a lot of pain killers and muscle relaxers. But that didn't help, so I went to a new doctor and I got one of those Nurse Practioners. She felt as though my pain was coming from being depressed becaused I had been recently divorced, which I didn't think was true because it had been a rough and rocky marriage. Then she sent me to this psychiartrist and then the next thing I know he thinks I'm bipolar. To make it short this medicine caused my life to become a living nightmare, I lost my job had to move back home, but in the end I finally got myself off of the medication and went back to work.
After that the pain still didn't go away and my feet were burning all the time. So I went back and they put me back on Celebrex but it still didn't help and I was starting to lose my hair. Then one day my left shoulder started drawing up to ear, so back to the doctor again and then I went to see two other specialist . Still no one knew what was wrong, I was told I had tortocolis, muscle spasms of the neck. But the medicine still was helping so I finally saw a doctor who knew what was wrong but by that time I had lost all use of my left arm and was losing a lot of use in my right arm. So I hope this never happens to no one else. So always keep trying to find a doctor who will understand before it too late.

sharon1030 · 02-05-2007, 07:10 PM

Hi,

I just wanted to welcome you to the board. You've sure been through a lot! I've also had RSD a long time...21 years...got it at 15. You're right...when you know or just feel something is wrong, you have to keep going to docs until you find someone who can help or at least help with an answer that is satisfactory to you.

I hope you like it here as much as we do. There are a lot of great people here so I hope you stick around.

Sharon

rayefaye · 02-05-2007, 08:40 PM

Thanks, I believe I'm going to like it here. I've being trying to find someone to talk to who understands what this disease is all about. Because people don't fully understand how much it changes your life and all the anger, frustration and sadness that goes with it. Which I don't worry about doubters because no matter what some people's opinion is, especially those who think that there's nothing seriously wrong with you. Because as I told my husband people's opinions don't make the pain go away and it doesn't help pay the bills. And I know there are a lot of doubters out there because sometimes I think my own mother doesn't think there nothing wrong with me. But that's ok because I have a very understanding husband and I have two wonderful daughters that are there for me and that's all that matters.

Skooze · 02-05-2007, 10:03 PM

Hi Rayfaye and welcome to the boards!

That's an awful long time to go from having an accident, and then having the syptoms of RSD show up 3 years later!

Are you sure there wasn't something else along the way that helped esceleate these syptoms?? I'm not doubting you, But the burning pain is always a side effect of this monster. My family never believed me at first either until they stayed with me for 2 weeks. After thee first week, they became very worried because I could't get up and move and be normal like when I first arrived

Losing hair is another symptom. So did you remarry??

I can relate to you drawing your arm up into your shoulder blade area in a fixed position. Mine does that all the time. I recently hurt my injured RSD arm, and the left wrist is about the size of a golf ball, and no amount of bengay seems to help

I am on 180 mg of morphine a day, with soma, xanax, and percocets for breakthru pain. Whatever you do don not put your arm in a sling!! Try to move the affected limb as tolerable.. Have you tried massage? One lady here has great relief with water. When you are in a warm pool all the pressure is taken off of the limb. I can't believe they thought you were bipolar, but anything for a DX right. I hope you are getting ssdi or some assitance. We are all here for you. Sorry I can't be of more assisstance, but I just wanted to welcome you to the boards. Aloha Skooze

rayefaye · 02-06-2007, 05:15 PM

Hi Skooze, I had problems after the accident especially with my right arm and both hands. I could especially tell when I would write and there would numbness in my right arm and hand. The doctor told me that I should regain the feelings in my right arm and hand where the sensatory nerve was damaged but they never returned. The symptons just kept keep worse over the years, the first major problems started with my legs. I had a job that I would have to stand up 10 hrs a day and by the end of the day my legs would hurt so bad I didn't what to do. I had the accident in 1983, by 1992 the problems with my legs started so I went to the doctor because I assumed it was just arthitis. Then in 1995, my legs hurt so bad for 3 days straight and no matter what I took it wouldn't relieve the pain. So then I went back to the doctor but I didn't see the regular doctor, I saw one of those Nurse Practioners. She decided that because I was getting divorce that the pain I was feeling was coming from depression. So she gave me some Prozac and if you've never taken Prozac, then don't. When that didn't help she sent to a psychartrist, who decided somehow that I was bipolar. Which he put me on Lithium, another drug to stay away from, then when that didn't work he put me on some Klopin and Nortriplyn. I was on this from 1996 to 1998 and the whole time I was still having the same problems with my legs and arms. In 1987, I also had another wreck which caused me to have whiplash in my the right side of my neck. Finally in 1998, I got my self off of the bipolar medicene that when my feet started burning and my legs continue to give me problems. Then when I also started having problems with my scalp, my scalp starting real itchy and little sores popped up on my scalp and the hair and the right side stop growing. The right side of my scalp was worser than the left side, I had to finally cut it short. I also started getting real bad headaches. I had one that lasted for a whole week and my scalp would get real tight. Someone told me I has psoraisis of the scalp so I got some shampoo for that but it didn't help. The doctor put me back on celebrex and give my something for my scalp but it didn't help and my feet continue to burn and my legs continue to hurt from standing on them all day. Nobody never seem to take me seriously or I just couldn't make no one understand. Then in 2003 that's when my shoulder started drawing up and my left arm went to hurting real bad and I couldn't hardly use it and it started burning in my hands and around my neck. I went to an othopeditic doctor, a neurologist, who did a nerve conductor test and told me two of the nerves in my left arm were dead. She told me it could be a virus in my nerves and that they should come around in about two years. When my neck keep having severe muscle spasms, I was told I had tortocolis, which is severe muscle spasms, so I went to a arthritis specialist. He gave me two Kobox shots in my neck but that didn't last long and I could no longer hold a job down so I applied for my disability. When my arm got no better I finally found a doctor who knew what was going that was is May 2004. That's when I found out that I had Rsd, Cervical Dsytonia and arthritis. So as you can see I search for help for years and no one seemed to have no clue as to what was going on. So this problem just didn't show up overnight. I was very young, and most people think you're making it up to get some drugs or because you don't want to work or just to get attention. My own family felted this way about me. But yes, I got my disability this year and yes, I got remarried to a wonderful man. He tries to learn all he can about this disease, he goes to the doctor with me. He asks questions about it and wants to know what they can do for me. So that makes me a very lucky person because my first husband couldn't have cared less.