I did not think that I had any symptoms when I was diagnosed with lupus. My doctor only told me that one day I will wake up and feel like a 90 year old woman with swollen joints. Every piece of information I have learned about lupus I learned ONLINE! Which is a disgrace as far as I am concerned and plan to let my doctor know about it. I am currently in a lupus "flare" and am now experiencing things that I had only read about before. Don't particularly care about them but have no choice in the matter. I am experiencing photo-sensitivity for the first time and get ugly rashes with either SPF 50 or 70. It hurts to believe that I may never be able to be out in the sun for more than a few minutes someday, or that I may never be out during day time hours. Good luck with your meeting with RH. Specialist and I pray he tells you more than my dr. did! God Bless.View Thread
I understand perfectly what you are saying. The best way I can describe the only true way of diagnosing lupus is that if you don't get a blood test at the exact time or day when the ANA's and the Creatins are not elevated, then you just go undiagnosed. It's similar to the sun, Earth and the moon all having to be in a certain position to have an eclipse. I was diagnosed by accident, I think. Not knowing that I was having any symptoms of lupus, I had a routine blood test but with a few more tests added on. The nurse called and told me everything looked good but that I had elevated ANA's but she couldn't explain what that meant. She told me that I had been referred to a Rheumatologist and I just assumed it had something to do with arthritis. Man was it a shock when he told me I had lupus! And the only thing that I have learned from him specifically is that one day I will wake up and feel like a 90 year old woman with painful joints! I have learned every other detail about lupus online and WebMD has been the best source of my knowledge. Someone recommended that I check out the Mayo Clinic site, also. I'm sorry to hear that your wife probably has lupus, but it's much more bearable somehow to know that there are others out there that she can commiserate with and to get more information. God bless.
It's 4:30 AM and I just joined the lupus community. I'm sorry that people have not responded to your posts and it's discouraging to me when I have so many unanswered questions. I was hoping this would be the place to go to find help and to talk to others who know what i am just beginning to go through. I have an appt with my dr today and have many questions for him as I am in my first flare. No support groups in my area. So far I have learned 99% of my information on lupus online and not from my dr. I'm awake right now as I thought I was having a heart attack at 2:30 but seem to be fine now. Please don't give up because thousands of people like myself need you and your knowledge. I love your saying after your name. It gives me some encouragement.