View Full Version : I am so frustrated

11-28-2007, 09:06 PM
Hi, I am new to this site, but am looking to people that have already been diagnosed for maybe some guidance/answers. My mother had Lupus for most of her life and passed away at age 53 (not from Lupus though). My maternal grandmother has it, but the skin variation of it. My sister was diagnosed last year with it now as well. I have had joint problems in my hand for the past 7 years now and Dr's have had a real problem diagnosing why. I finally had a joint replacement (even though everything pretty much looked ok before) in my right hand. This was last Jan and the pain returned a couple months ago, so am now being seen again. I have always had Thrombocytopenia, but have leveled out a bit with it the past couple of years. I am always tired, but always figured that was because I work full time, am married to a military man which forces me to be a single parent of two quite often. My eyes are always dry, I have a lot of knee pain (they can't figure out why) and am still going in circles with my hand. Cortisone injections right into the joints is all that has ever helped the pain subside. Now I have moved to a different state once again (due to the military) and have had to start over with new doctors...Does this possibly sound like Lupus Symptoms? Oh, and forgot to mention that I have had the "butterfly rash" but was about 25 years ago when it was real dominant. I do love being outside in the sun and when I am I do get rosy in the "butterfly rash" areas but it's not a rash?

Any advice?????

sick n tired
11-28-2007, 09:28 PM
Has any of your doctors ever done an ANa test?

The most frustrating thing that I have had is when I have some tests positive and others come back negative and/or normal. I have been having symptoms for at least 10+ years, but until recently no doctor that I went to took it seriously. I went to a new dr and he tested me for autoimmune disorders and hepatitis c and both came back positive. The dr is still waiting and checking the liver stuff. (actin smooth muscle was high) Some things are coming back normal and others positive. When that happens, then the Doctors are not going to give a definitive diagnosis.
Other tests for lupus have been consistently coming back high. So my Rheumy is now saying that I have lupus he is just working to find out how extensively I have it. All I know is that I hurt. I hope in this new state that you can get someone to listen to you.

In Him,


11-28-2007, 09:49 PM
Yes, I went to a Rheumatologist and they tested me for the auto-antibodies that eat my platelets and that came back positive, but I thought it just had to do with the Thrombocytopenia. I have just been tested again and am awaiting the results, so I guess I will see.

Thank you for your post

12-03-2007, 05:44 PM
Let us know what the results of your tests are so that we can, hopefully, help you a little bit more. :lol:
Peace and Blessings