View Full Version : Hello! New member!

03-26-2013, 12:12 AM
Hello, my name is Antonia. I was diagnosed with lupus twice. Weird? I know. Let me explain. When I was 12 years old I started getting small rashes on the folds of my arms. Went to the dermatologist and the verdict was eczema. Next I located a lymphnode the size of a golf bsll on the left side of my neck. I had it removed as well as other lymphnodes under my arm. They were being checked for cancer. They were benign. As I got older I had more symptoms, tests and extensive hospital stsys. My eczema was do bad that it covered me literally head to toe. I had fevers on a daily basis. The highest was 105. Chest pains and nose bleeds. Hair loss and stiff joints. I felt like a freak! Thank God I had my mom to take me to the doctor and be at my side. Around 15 years old I was diagnosed with lupus. I was taking a lot of medications so the only one I can recall are plaquenil and prednisone. So fast forward to when I was 18. My skin had completely cleared up and all my symptoms just disappeared. I was soooooo happy! Normal life! No more meds. I had remained symptom fre until june of last year. I was 23, married and I had just had my third child a month earlier. My family was gathered for my daughter's first birthday. I remember eating a hamburger. As soon as it hit my stomach I had the most excruciating pain. I couldn't catch my breath. I started to become extremely fatigued and my joints were stiff and swollen. I also had a lot of sharp pain while breathing. The one thing that made me run to the doctor was when I had taken a part time job in july and after six months I had to quit because I was having bad dizzy spells from being on my feet for a long time. I also started getting nodules on my lower legs. I went to Duke Rheumatology in February and took a lot of tests. I was scared that my lupus was back. I gave my records to the doctor and she didn't think that I had lupus. She thought it was RA. She put me on plaquenil and volteran. I got my test results back a week later and the doctor told me that it was indeed lupus. I had a positive ANA (1:2560 titer speckled pattern), positive for anti-ssa antibodies, high sed rate and I am anemic. I already knew that from childhood. I have an appointment next month. The doctor said that we will discuss further treatment. I just manage taking a day at a time. I will not be defeated. Ii just need some of you to relate to me and how hard the road to diagnosis was and how difficult are some days.

03-26-2013, 08:45 AM
hey there!! im from nc also :). that is weird to be dx with lupus twice!! it seems that the lupus became dormant again, then decided to show its head again,,, i guess it missed you!!! im cecee and im 21. i was dx with lupus when i was 13. it was hell for me cause i was just starting to be a teenager and just wanted to fit in. instead i became the gossip that everyone wanted to talk about snd make speculations about what they thought was wrong with me!!! anyway glad that you found this site and welcome!!

03-26-2013, 08:49 PM
Thanks! The picture uploader doesn't work :( . I think that my lupus had gone into remission and then it came back. I was born and raised in northern virginia so I had seen so many doctors and the knew my predicament. But when I moved down here I kept being told that it was all in my head. Then the test were redone. I can't stand that about doctors because I know my body better than they do. So if I say I don't feel like myself then they need to take that into consideration. I hate this because I don't want people thinking that I am super lazy because I am always tired. I just need to talk to people who understand. That's why I joined this site. I don't know anyone else with lupus. What part of NC are you from?

03-27-2013, 03:19 AM
i hate that about doctors too. some think they know everything but they are not with you 24/7 nor do they live inside your body to know whats going on!!! i live in wilmington nc

03-27-2013, 06:49 AM
Sadly it's not uncommon for doctors to "undiagnose" because too few really understand this disease. If the lab work doesn't show exactly what they want to see they assume the last doctor was wrong and change the diagnosis, often taking us off meds that were working (and changing our lab work) which can make us worse again.

hope you get to feeling better soon. Welcome to WHL

03-27-2013, 07:16 AM
I know cma. Sometimes I feel like I know more than a doctor. Like you don't need a degree. It's sad.

03-27-2013, 07:17 AM
Thank you tgal!