Hello, all. I am yet another newbie who is frustrated by the symptoms of SLE but just can't seem to get a diagnosis. My symptoms are: extreme fatigue, joint pain & swelling, edema, headaches, confusion, worrisome memory loss, muscle spasms in legs & arms, irritable bowel syndrome, asthma, dry eyes, sharp pain in eyes (occasionally), frequent low grade fever/chills, and rash on the knuckles of both hands, my ankles, knees & elbows. I also seem to develop extreme symptoms from about Mar-Sept each year, which leaves me unable to care for myself or my children (I am a single Mom). My Mother died of complications from Scleroderma, which is another terrible autoimmune disease, so as I understand, that makes me more susceptible to autoimmune disease myself.
I have back & neck problems anyway, so I thought that my inability to get around was due to that, but when I took all my symptoms into consideration & did research, Lupus was the only thing that fit me to a T. I finally saw a Rheumie a few months ago & my labs were very conflicting. My ANA was positive (1:160 with a homogeneous pattern), and my SED rate was elevated to 50, my C4 was elevated rather than low, and my ANA profile was negative. Because of this, the Rheumie says I am fine & probably just suffering from Fibromyalgia and Osteoarthritis. I don't know how to make it clear to any of my physicians that I am severely debilitated 6 months out of the year, so much so that my friend has to take my toddler for me to live with her for most of that time! Is there anyone out there who had some tests come back negative but were still diagnosed? Am I crazy in thinking that Lupus is what I have? Should I see yet another Rheumie? HELP! I am so confused.
chellbelle, hello & welcome. I'm sorry you're having all these problems.
Has a dermatologist evaluated your rashes? Do they resemble psoriasis? I ask because someone I know had rashes on ankles, knees, elbows & hands; and psoriasis favors those sites, which is what caught my eye. He had severe pain in multiple joints (incl. spine), massive fatigue, and other problems. A rheumatologist dx'ed him with PSORIATIC ARTHRITIS, which can damage joints (incl. spine) and cause many other problems, too. (It definitely requires treatment.)
But from reading, I believe people with LUPUS also have psoriasis fairly often, and I imagine psoriasis co-exists with other conditions as well. So if your rashes ARE psoriasis, that wouldn't suffice to determine what's going on, I bet, but it could add another piece to the puzzle. Or, if your rashes are lupus-specific, that would be a HUGE finding. So if you haven't seen a dermatologist yet, I would if I were you.
And, yes, I'd try another rheumatologist. I'd want him to consider lupus, but also other conditions like psoriatic arthritis, rheumatoid arthritis (which doesn't always show up in bloodwork), and various other "close cousins" to lupus. To learn more, you could borrow lupus books written for patients from your library. Look for ones that discuss diagnostic criteria, various "subsets", various rashes---and, perhaps most useful to you, how lupus is differentiated from its various "close cousins".
I also had labs that didn't look like classic SLE, and my rashes weren't malar or discoid; this flummoxed my local specialists, who all said "fibromyalgia" or "I don't know". But the teaching hospital rheumatologist I finally saw figured it out in seconds, subject to new labs & one last skin biopsy. (Dx turned out to be ANA-negative lupus, with positive anti-Ro, which is rare; and rash was SCLE, a less common lupus-specific rash.) As a result of my absurd journey, I think when lab results are "fuzzy", you need a specialist who knows the conditions that announce via labs AND the conditions that are diagnoses of symptoms, not labs; and if you get rashes, a really good skin specialist.
I'm so sorry to read that you lost your mom to scleroderma... a terrible loss from a terrible disease. Anyway, I'm only a patient, but I hope above gives you some more ideas to explore & to discuss with your drs. Post more soon, OK? Sending my best wishes to you, sincerely, Vee