Since there is no one test or scan or x-ray that will help a doctor give someone the diagnosis of lupus, doctors have to put together all the pieces of a complicated puzzle. And when they do, I think they're reluctant to label someone with lupus until they're absolutely positive that their patient does in fact have lupus. They realize that the diagnosis will never be erased from your medical records. If they misdiagnose a patient and give them the wrong meds, and the patient has a bad reaction, they can be sued. It took me years before I understood why, when I kept telling my doctors that I believed I had lupus. Looking back, I think they knew too, but they weren't trained to sit down with me "I believe you do too, but I don't know for sure and at this point waiting isn't going to hurt you." It was so absolutely maddening. I know what you're going through. You feel sure you have it but you don't get validation from your doctors.
There are steps you can and should be taking now if you aren't already. First is to make sure you're going to the best rhumy you can get into, and even more importantly, make sure he or she takes the time to talk to you and explain things to you. Sometimes doctors don't talk to the patients who don't demand that extra attention because they are pressed for time. But I've found that once they realize that you are trying to better understand your illness so that you can better care for yourself, they'll take the time.
Surely you've read all of us talk endlessly about the necessity of keeping a log of all the symptoms you have or have ever had. I break mine down into (1) symptoms I'm having now; (2) symptoms I've had in the past (3) symptoms that come and go; and (4) duration of my flares. I give it to my rheumy in typed outline form - as short and precise and inclusive as possible.
At the end of that list is the list of (1) my meds; (2) my other doctors/names/phone numbers and which ones I want reports to be sent to; and a list or prior illnesses, surgeries, and hospitalizations.
Then comes my list of questions. I know that anytime I walk into a doctor's office without my written list, my mind goes blank. I also know that I've never been in a doctor's office with a list, however long, when the doctor wouldn't answer every one of my questions.
I also write down everything the doctor tells me because when I leave a doctor's office my mind goes blank once again. Call it brain fog, a senior moment, or what you will, but I just don't remember any more.
By doing all these things you're taking your health into your own hands. The more educated you become about lupus and other autoimmune diseases, the more you and your doctor will get from your appointments. And make his or her nurse your new best friend. Many many times I've gotten help from a nurse in a phone call that would have taken me a month to get from a doctor.
I also believe that for myself, taking all these steps made me feel a little more in control, or maybe I should say that prior to taking these steps I felt totally out of control, scared, confused, and lost.
If you're not bored to death and buried after reading this, I'll answer your question. It did take years for my diagnosis. However when I had my first major flare and couldn't get out of bed for 3 weeks, my ANA was positive for the first time, so I don't believe waiting hurt me. It would have tough if I had been having real bad flares without a compassionate doctor on board to help me.
You're doing a smart thing be joining this forum and becoming a part of this family. I didn't have the courage because I didn't have the diagnosis, so I didn't think I'd be welcome or taken seriously. I was so wrong. It's people like you who need this forum more than anyone. The rest of us have our ups and downs but we seem to make it one day at a time.
Come to us for comfort. We'll be here for you.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.
cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin