How did you get diagnosed?

I have Ulcerative Colitis and have been having weird symptoms so my gastro doc sent me to a rheumatologist today that was one of the crustiest crotchetiest people I've ever met. So I am not sure whether to go see another rheu doc or just let it go. How do you get confirmation of Lupus? My biggest complaint over the past six months has been unbearable fatigue - I have fallen asleep at my desk several times over the past few months. I also have had chronic hives and several other strange rashes that just popped up for no reason on my face, chest, stomach and back (no "butterfly" rash.) I get sores on the roof of my mouth and it makes it very painful to eat. I have joint pain - my back has been hurting a lot lately and the crotchety doc today said it might be the spondylitis or whatever but it is treated with Remicade which I take anyway. My hands hurt a lot, and every few days my left hand hurts like it has been hit with something so I can't straighten it out. The lymph glands in the back of my head swell all the time for no apparent reason.

I am not saying I have Lupus, I was just hoping the doc today would be more helpful. He said what I have is "painful joints" and that you can't have arthritis unless you are swollen for several days and red. Huh? I am tapering off of Prednisone right now for an UC flare so the "painful joints" has been a little better but before then it had gotten pretty bad.

Thanks for any insight!!

Hi Angel, I agree with Lynnwood's post !! Some of your symptoms do overlap between UC and Lupus . . . but the rhuemy STILL should be addressing the joint pain issues. He also should have checked into the Ankylosing Spondylitis issue or referred you to someone who could. Next time you have the mouth sores, make sure to take pictures of them. You can bring these in to the next doctor/rheumy appointment. I'm wondering too if you have Crohn's and not UC. Maybe it doesn't make any difference because of your treatment . . . but the Chrohnie's also get mouth sores and joint pain. I would do as Lynnwood suggested and find a rheumy who WANTS to treat lupus/autoimmune patients. Sorry your were treated so poorly by this "doctor". Blessings!

I would definately look for a new rheumy for a second opinion but make sure the doc is a lupus expert. Also check to see if most of the patients are elderly because when they are the doc usually is not a lupus expert no matter what the office says- having a handful of lupus patients does not make one a lupus expert. I wish you were in S.E. Michigan because I could tell you a really good rheumy to visit.

Check out the Lupus Foundation of America site.  Here is the page that describes diagnosing lupus.  Explore the site...there is much more to help you.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=380&zoneid=19

It is important to find a rheumatologist who is experienced with lupus.  Other doctors will not have the experience to help you.  Doctors who are part of a university hospital or clinic that has a rheumatology department are usually the best and most experienced.

Bill

Angel, I completely agree with the others. You did not get a good rheumy the first time around and it would be worth getting another opinion. A lot of us, including myself, have had to go through several rheumies before finding a good one who will really listen and try hard to figure out what is causing your symptoms. My first rheumy didn't listen at all. I had my second rheumy for almost 2 years because initially she seemed more interested and called what I had "lupusy" but as I got sicker and sicker, she wouldn't help with changing or adding any meds, so I decided to see a different rheumy. I was so sick by the time I saw him that he diagnosed me that day and worked with my meds to help me be as comfortable as possible. I am now doing the best I've ever done, so a good doc can make all the difference. Hang in there - there are a lot of people who are in diagnosis limbo. Please continue to ask any questions that you have. I'm glad you joined us and I hope you will keep us posted on what is going on with you and what you find out.