For years now, I have been told that I had red flags (and am highly positive) for a connective tissue disorder. I consistenly have an ANA titer of 1:640 and test positive for anti-phospholipids (I am been told to take an aspirin a day for it). I also had a high sed rate at one time (but am not sure if it is still high.) I am slightly anemic (but not anymore since I take a multi-vitamin that contains iron). (In the past, I have had a low white blood cell count but it is not usually someone high because every time I go in to my reguluar family doc., I have a sinus infection or something.)
I have interstitial cystitis (diagnosed through a cystoscope) for ten years. I was diagnosed with IBS five years ago. I have many food intolerances. I am in my mid 20s now.
Most recently, I seem to be 'sick' all the time. Colds, sinus infections, you name it . (Year-round). I catch everything (even when no around me is sick). I have had 7 sinus infections in the the past five months. The only thing that gets rid of it is antibiotics. (I have had sinus surgery and am still getting infections. I have sore throats several times a week for the past five weeks. (It is August and I am sick with another sinus infections and sore throat. I am tired a lot, but I am unsure if it is due to the infections or just something that's normal. I need to take naps a lot.
I also have a slightly raised brown raised patch of hyper-pigmentation on my arm. I've had it for years but it has gotten larger in the last few years due to the sun.
I see a rheumatologist this week (haven't seen one in four years).
My fear is that he will once again tell me I have some signs of a connetive tissue disease (as they always tell me) but I don't have anything else.
This means no one will help me.
I can't keep getting sick! Help! What do you think? Does this sound like lupus?
Hi, Amber. You can find condensed info on lupus in the 3 "sticky posts" ( = permanent informational posts) at the top of the thread list. One lists the diagnostic criteria for SLE = systemic lupus erythematosus. You have to meet 4 or more, but not necessarily all at once, to support a Dx of SLE. So you should expect your new rheumie to take a REALLY THOROUGH lifetime medical history.
You mention cystitis, IBS, and frequent sinus infections. (DITTO to all 3 myself.) But those things don't "necessarily" point to lupus, as they can happen in & of themselves.
But I *think*---in my non-professional way, that is---that your positive ANA & antiphospholipid antibodies should count to fulfill two criteria. Keep trying, as there are excellent drs. out there that people like us really need to find. When is your appt? Bye for now, with my best wishes, Vee
P.S. Among many other things, I struggled with severe IBS for 20+ years, with cystitis for 10 years, and with nonscarring arm/torso rashes for 8 years. I saw all sorts of drs., including multiple dermies, obviously. Turns out I had the SCLE "subset" of SLE, positive for anti-Ro. Plaquenil & sun avoidance have helped tremendously. You are in your 20's, you wrote, so I strongly encourage you to SEEK ANSWERS & HELP with EVERYTHING YOU CAN MUSTER! My suburban drs., including rheumies & dermies, were a bust; so I went to a teaching hospital rheumie---who made it look so easy.