I'm so sorry you've been going through this. I empathize. My last rheumatologist was kind and understanding at first, but she was insistent I didn't have an autoimmune disease despite my positive ANA and a multitude of clinical symptoms. When lab tests indicated mixed connective tissue disease, she refused to explore it. I have an appointment tomorrow with a new rheumatologist who specializes in MCTD and other connective tissue disorders, such as Lupus. She sounds like the perfect person to see, but I have had so many bad experiences with dismissive doctors that I'm a nervous wreck before even meeting her. Too often when I first see a doctor, I end up crying when I tell them how my health has deteriorated over the last ten years, and then most of them focus on anxiety and depression, ignoring the long list of clinical signs that my body is at war with itself.

It's hard to step away from my health when the pain, fatigue, and other symptoms are constant reminders that something is wrong.

Sorry. Obviously I understand the need to vent too! I'm trying to get my ducks in a row for my appointment. How do I answer the inevitable question, "What brings you here today?" Do I bring my notebook with my chart of symptoms, test results, and possible diagnoses, or should I just wait and answer her questions? I really want a collaborative relationship with members of my healthcare team, and I'm hopeful that new doctor feels that way too.

You obviously know a lot about your test results and what's been discovered so far. That's a good thing, no matter what kind of reaction you're getting from some of your doctors. It's your body, and you know better than anyone what you are experiencing. I believe it's important to be proactive rather than reactive; I wouldn't have made the progress I have so far in getting the answers I've gotten, such as it is, if I hadn't pushed and advocated for myself.

Like you, I want to know what I have so I can evaluate my options, figure out what to do about it. I'll tell you what helps me during these tough times, though, is knowing that I'm not alone. I don't wish these struggles on anyone, but forums like this one mean the world to me because they let me know it's not just me. When I doubt myself, when I wonder if maybe the doctors who dismiss my concerns are right, I find strength in knowing that despite the lack of answers or even validation, others are persevering in finding those answers. So best of luck to you. Here's hoping you get the answers and help you need. Vent when you need to, and keep advocating for yourself. We're here for you.