newbie with possible lupus..

Well, I am brand new here, just trying to get some opinions and advice about lupus. I suppose I should start from the beginning. I had started the whole process of getting lap band and I had mentioned that I was partially diagnosed with a connective-tissue disease. You see, I have three reconstructions on my knee due to dislocation. I have extremely relaxed joints with stiffness and pain, so a random doc I had seen mentioned that I probably had a connective-tissue disease. (he never followed thru with tests) Well, the surgeon told me I needed to follow through with a rheumatologist. I had to see my primary doc for a referral and he doubted that diagnosis so he ordered some tests. I got the results, and it didnt say much except that my C3 was abnormal and to follow up with my PCM (primary care physician) I called the office and they told me that it could mean one of many things and not to worry, but that she would have the doctor review it and call back with his notes. Days went by and the nurse called me back. Apparently the letter didnt explain it all and she said my sedimentation and my ANA were high as well as my C3 being abnormal. She mentioned rheumatoid arthritis and Lupus. I wasnt familiar with Lupus (I guess Im still not) so she mentioned kidney problems, joint swelling and pain, eye dryness, hair loss, etc. This had me pretty alarmed. She then told me that the doc wanted a follow-up immediately. So I scheduled the appt for 4 days later.

The things that have me extremely worried are that I have been having reoccurent kidney infections for YEARS. Im talking 10-12 infections a year. No one has done any tests to find out why, they have just been treated. They stopped for 2 years, and now they are starting once again. The joint pain is the other. My feet and hands swell often and my knees are always stiff. My hands and soles of my feet get red, and swell and ITCH for DAYS. In addition, for the last 6 months, I have spiked fevers and had like 12 hour flus. One more thing is that I have had some very strange infections. Thinking back on it, I always had an infection of some kind or another. Ear, eye, sinus, chest, kidney, bladder, vaginal, cervical, lymph node... Its scary.

I dont know if I am trying to connect my medical problems with this, or if I really might have it. One moment my head tells me to accept it, and the next Im totally in denial and think this is all a mistake. Im not sure what Im wanting anyone to say or do. Maybe I just need someone to help me wrap my head around this. Im only 25. I dont want to die early, I dont want to be in pain, and I sure dont want to miss out on any parts of my sons life because Im sick. Im so independent and I think Im superwoman all the time. What would I do if my husband had to take care of me?

If anyone can help in anyway, or if anyone thinks these test results are vague, please tell me. I dont know anyone with this disease, and no one in my family had it that I know of. I just need someone to talk to about this... Feel free to im me on yahoo if you'd like. kayla_loves_allen

Imabitdizzy,

I agree with Lynnwood about taking a list of all of your symptoms (past and present) to your rheumy's appointment. Typing it up will help prepare you for your appointment and it will help your doctor get a better handle on what you're talking about. Also type up a list of questions you have for him.

I hope you get some answers. Please let us know how the appointment goes.

Pat

Thanks everyone, I appreciate the support! I went back to the doc and got a referral for the rheumy. I should get a call with my appointment on Monday. Until then, I have to wait. MY doc also discussed my test results. My ANA was 1:160 speckled, My Sed Rate was barely elevated at 21, and my C3 was very high at 209. Not sure what those things mean, but thats what she told me.

Imabitdizzy,

A low C3 is indicative that one's lupus is active. I'm not sure what a very high C3 means.

Pat

High readings usually mean your disease is active.

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003539.htm

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

Hope this helps you to understand.  In most cases diagnosis is a combination of lab tests and clinical symptoms.  There is no single test for lupus and diagnosis in some cases is very difficult and can take a long time.  That is why it is important to have a doctor experienced with AI diseases who can put the pieces of the puzzle together. 

Bill

Patty,

Sorry, I got it reversed.  However, complement tests are not conclusive and are used to confirm diagnosis as I understand diagnosis.

http://www.lupus.org/webmodules/webarticlesnet/templates/default.aspx?a=364&template=print-article.htm

Bill