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05-07-2013, 11:16 AM
Hi everyone... New to this forum...have had multiple episodes over the years with severe joint pain and fevers....chronic skin condition, pleural effusion,elevated sed rate, elevated CRP,arthritis in hands and feet...have been told by several doctors that I have autoimmune problems...but never diagnosed..negative ANA in the past...just spent last three days in bed with low grade fever, joint pain and chest pain...saw my GP yesterday and she wants me to see another rheumatologist...if not Lupus then any ideas?
05-08-2013, 03:04 AM
Welcome to WHL.
The only advise I can give you, is to find another Rheumatologist, he is the only one, who can answer your question.
There are so many different AI ( autoimmune diseases) out there, it is difficult to pinpoint which one you have, or if you may have a mixture of several.
The bad things about these AI's are, they are very hard to diagnose and it sometimes takes months or years to get a clear answer.
A new rheumy will first take a extensive bloodtest and go from there.
I hope, that you will get answers and treatment soon.
05-08-2013, 07:56 AM
Great advice from Debbie - I would just add that often, a hard diagnosis is not even that critical, and doctors may disagree on it...but in the end, most AI diseases get the same kind of treatment, anyway, so I'm not even sure how much the diagnosis even matters, aside from maybe making US feel better so we can give a name to things.
Sometimes finding the right treatment can take a long time - a year or more - and over many years, your needs may change, so diagnosing and then treating these things is more of an ongoing PROCESS rather than an end-point of getting AN ANSWER/DIAGNOSIS, and then THE TREATMENT. It will (hopefully) reduce your frustration if you go into things with that knowledge.
Best of luck - do lots of your own research and let us know how things go!
05-08-2013, 08:05 AM
Hello and Welcome:
I have to agree with what has already been said. There are many here who have not received a specific diagnosis or who have been told that they have MCTD or UCTD.
Diagnosing Lupus (or any auto-immune/connective tissue disease) is a very difficult process and can be a quite lengthy one. Many of these diseases have overlapping symptoms which mimic one another and sometimes symptoms go away, or new ones appear over time. So, we cannot give you any suggestions about what your symptoms might indicate.
I would like to reiterate what SleepyinSeattle stated: The treatment of your symptoms is, basically, much more important right now. If doctors provide you with treatment to manage your symptoms while in the diagnostic process, it will be a bit easier for you to deal with your symptoms until you do get a final diagnosis.
I wish you the very best!
Peace and Blessings
05-08-2013, 02:10 PM
Timely that you posted this... I just got back from a trip visiting my rheumatologist specialists at a teaching hospital, who I go see every six months. I've had a handful of strange symptoms show up over the past two years, and all that is certain is that they are manifestations of a systemic autoimmune disease. At first, I was assured when new symptoms showed up, that would help diagnose me, so I just needed to wait. Instead, when I've gotten new symptoms, they've made my diagnostic picture cloudier instead of clearer.
I was asking the rheumatology fellow I saw and her attending physician why we still don't know what I have. And the attending explained that very little is certain in the world of rheumatology and autoimmune disease. You have so many factors -- your genetic disposition to AI disease, the environmental factors that may trigger the AI disease, treatments you've tried, other aspects of your makeup -- that contribute to how an AI disease manifests, that no two AI diseases are guaranteed to turn out the same.
"But what disease do you think this will become?" I pressed.
"I just can't tell you," the attending said. "You could have an antibody at work that we've not yet discovered and can't test for. Or maybe you do have an antibody we know of, but your normal level is much lower than everyone, so your tests come back normal, but they're actually abnormal for you."
I think I looked a little frustrated at this point, and the attending quickly added, "But look, we know you have a systemic autoimmune disease, and we know ways to treat that."
That helps. Like folks above were saying-- the big hurdle is determining whether you have an AI disease. After that, there is a pretty well-established hierarchy of treatment, usually starting with a relatively benign disease-modifying drug called Plaquenil. So, I'd go see the rheumatologist and see what she says. But if you don't get a firm answer, try not to worry too much. If anything, you're in good company!