Hello,

I am new to here but I am so glad to have found this forum. I have posted in the sticky on SLE criteria with a little history of myself. I started 6 years ago breaking out in this rash whenever I would get out in the sun. It was horrible and my mom told me that maybe I needed to get in the tanning bed to get rid of them, she thought they would dry up cause some of mine were like blisters. Well that was a total mistake because it made things worse. It seems that every year that passes the ailments I have just keep getting worse. I have a foot that is cold all the time and mostly stays white. I have pain that runs down my right arm and right leg and this is pain. I have low grade fevers that come off and on but mostly I have this achy all over feeling like I have the flu. My hands, wrists, elbows, shoulders, hips, knees and ankles all hurt but not all the time. If I get cold I hurt more all over. I am tired all the time, if left alone I think I would sleep all day. I have chest pains and get to having a hard time breathing and almost cant talk cause its like it takes my breath away. My hands and feet go numb and tingly feeling mostly when I sit for a short time. My legs have started to swell all the time. I have leg cramps in my right leg almost all the time now, it used to be just sometimes. I have recently had some small sores on my tongue that make it feel numb. My rash I get is usually caused from the sun so I thought but I have started having rash breakouts all the time. I recently went to the dermotologist who did a biobsy of my rash and well to the surprise of both of us it came back saying it was lupus. I have had more tests then anyone can imagine and my ANA comes back negative. My dermotologist has taken more blood this time to see what it might show. She told me that since that came back lupus that would explain all the symptoms that I have been having. I will have these results back and see the doctors on the 20th of march and I am curious if there is anything I should be asking them when I go or to be honest I am not sure at all how I am suppose to take this all in. I want to cry then I laugh then I think how is my family going to understand all this and how it will affect my life which in turn will affect their's.
I know this is a long post and I am sorry for that but I do not know where to turn or where to go. I am scared and maybe that is because of the unknown. I dont want to burden my husband, 4 kids and the rest of my family with my worries and concerns.
I do have one question though is it possible to have a rash come back with lupus and have your ANA be negative and still have lupus. Do I need to see more doctors. Right now all I have is my dermotologist and my internist. Thank you to whoever reads this and I promise not to post this long again.

Deyene61