Discussions By Condition: Medical Stories

I have been misdiagnosed twice now.

Posted In: Medical Stories 0 Replies
  • Posted By: jenn38018
  • October 28, 2006
  • 06:50 AM

Hi, I am a 29 yr old mother, wife, student, etc. I started having a lot of pain in my joints and numbness in my legs and feet when I was 21 yrs. old. I decided to go to the doctor and they ran some blood tests. The called me and told me I needed to go see a rheumatologist. I did, and the rheumatologist told me she thought I had rheumatoid arthritis based on my symptoms and test results. She said I am ANA positive and have a high RH factor and sed rate. She started me on some of the NSAIDS and I just tried to act like everything was normal Several years later I got pregnant, and started having some trouble with the pregnancy. I had a lot of cramping and contracting all the way through my last half of the pregnancy. I also had a very difficult labor and birth. The week after my son was born, I fell apart. I dropped my newborn son in his crib because my wrist went out on me while I was holding him and pain shot through my arm. I was very tired all of the time, moody, etc. I knocked it off to postpartum stuff, and tried to keep going. By the time my son was 3 mos. I was having even more symptoms. I would be talking and just forget what I was saying midsentence, or just couldn't get the words out of my mouth. My vision became very blurry and I just felt like I was walking around in a fog. My joint pain and stiffness was getting much worse, and I started dropping things a lot and staying really off balance. I contacted a different rheumatologist this time, and he sent me to a neurologist to check for MS. They did an MRI and CAT scan and found nothing on that, so they just kinda forgot about me after that. Eventually the neurological symptoms subsided some, and I went back to my doctor to try a new treatment for the RA. He put me on methotrexate. It immediately started eating at my stomach to the point where I couldn't take it anymore. I was becoming frustrated with that doctor, and moved to another rheumatologist here in town. He also diagnosed me with RA and treated said he was going to start treating me with Enbrel injections. I then found out I was pregnant again and had to postpone treatment. This pregnancy was even worse than the first. I had severe cramping and pain anytime I stood during the pregnancy, and I began contracting at about 30 weeks with her. I was hospitalized twice and put on magnesium to stop the contractions, and made several other midnight visits to the hospital with contractions beyond that. I was put on bedrest, but became hypertensive, so they induced my two weeks early. I had a very painful and difficult labor and delivery, but she was healthy. Right after having her I had another bad flare up and was really hurting. My doctor and I went ahead and started me on the Enbrel and he told me not to nurse my baby. I stayed on the Enbrel for a while and kept getting sick with infections. I actually felt worse while on the Enbrel, so we discontinued that treatment. I finally started questioning my doctor about results that I still hadn't seen from several tests he had done in the past. I requested my medical records. I saw that my RH factor was high, my sed rate was high during flare ups, my lupus titer was speckled, and my bone scan showed osteoarthritic changes in my feet, hands, and knees. My chest x-ray showed some thickening and straigtening of the wall of my heart (I have no idea what that meant). He had not bothered to tell me any of this. I then changed doctors and decided to see a research doctor with UT. He is young, and very up-to date on the latest research and treatments for these diseases. He looked at all of my tests, and did some of his own, and said he didn't think I had RA, but that he felt pretty sure I had severe fibromyalgia. I didn't know what to think, but I was kinda relieved. It has now been a year since I have seen him, and things are getting progressively worse. I have bad vertigo, I have had symptoms of a heart attack several times, but ecco and ultrasound always come back clean, my feet and hands go numb if I walk some distance, my fatigue and morning-stiffness is horrible, and I have suddenly since I had my daughter become allergic to five different drugs that I was never before in my life allergic to and had taken several time before. My head always itches like crazy at night before I go to bed, as well as my upper back and legs, and my tongue feels like it swells before I go to bed sometimes, almost like I am going to swallow it if I don't press it to the roof of my mouth. These things seem so strange to me. A few weeks ago I took my son to the movies, and as we were standing in the lobby with our concessions waiting for someone to meet us, my ankle went completely out on me, and I fell out on my back in the middle of a busy lobby. Food and drinks went flying everywhere, and I was mortified. Nothing happened to cause me to fall. I was standing completely still, no twisting, stepping, nothing. Then the other day I was walking across campus and when I took my next step, my left leg locked for a moment. I am really starting to freak out now, because I am only 29 yrs old and don't think I should be doing this at this point in my life. I went to my rheumatologist and he agreed that there is something going on besides just the fibromyalgia. He thinks I have advanced Osteoarthritis, and a meniscal tear in my knees. I just find it completely hard to believe that a 21 year old girl starts getting Osteoarthrisis to the point of debilitation that early. Then I started reading about how osteoarthritis can stem from lupus. I have suspected Lupus as a culpret for many years, but nothing has ever come of it. My doctor is now sending me for MRI on my knees, and will probably have to do surgery if he finds a meniscal tear. I am just so confused right now. I am so scared that we are missing something that we could be treating while I am young, and before it gets too bad to be able to help.

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