Hi Lis, and welcome to the forum. You've come to the right place! This is where I came when I was in Lupus Limbo and there are plenty of folks who are in the same place you are. IALupus is right. Most doctors are so reluctant to put a diagnosis of lupus in your chart even though they "know" you have lupus, as it appears your rheumy does, because once it's on your chart, it will never come off. And once it's there, it becomes very difficult, if not impossible, to get things like long term care insurance, life insurance, and in my case, I had to go to the state , because I'm self-employed, to get health insurance. They have an insurance group for people who can't get health insurance through conventional ways, so I get my insurance through them. It costs me $850 a month, with a $2,000 deductible and then it's 80/20. Like you, I wanted someone to confirm that I had lupus. I knew I had it and had known for years that I had it and was so frustrated that none of my doctors would confirm it. I felt as though no one believed I was really sick.
What I'd recommend to you is that before you get a diagnosis, you run out and get the most life insurance you'd ever want, and get a good long term care insurance policy. Fortunately I had already done that.
That's all completely off the subject, but your post just took me back to my situation a few years ago.
You'll meet a lot of wonderful, supportive, and knowledgeable folks here. We all come here to ask questions, to support each other, and to vent. I'm happy you're here!
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin