Seeing a second Rheumatologist, because the first one I was referred t

I’m so fed up with the Medical System in this country. It took me 8 years to get a diagnosis of Systemic Lupus & it was only because I went to a clinic in Wisconsin when I lived in the midwest that is known as a “mini-Mayo”. The Doctors work in a team to try & figure out what is going on. It literally saved my life. After dealing with years of Dr.s that were dismissive, even insinuating it was all in my head as I was getting sicker, I felt so alone & scared I was going to die before they figured it out. My family had to watch me go through all this, helpless as to what to do.
After my diagnosis & treatment I slowly got better & became a much better advocate for myself over the years.
Fast forward to now. I’ve been pretty sick for the last month. I have not found a Rheumatologist since moving here but I’ve been being bounced around again, from one specialist to another. And I’m getting conflicting information. That has made me determined to get into the Mayo. I need a coordinated plan between all these specialists, to work as a team.
When you are sick the last thing you need to be doing is trying to follow up with multiple Drs. , get referrals, deal with insurance & because you are not getting answers, researching medical information to validate your symptoms.
I hope you all find answers & good care. Thanks for letting me vent. It helps to know we are a community & not alone!

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.

@momac59 that’s so horrible! It shouldn’t be this way! Are you at least getting treatment for your lupus, while being bounced around?

@nikkiwill trying to get into The Mayo in AZ. I should hear by tomorrow and am hoping that I can get in to a Rheumatologist very soon.

@mmmerrimac I also have been to so many Drs of all different specialties. I think 5 Rheumatologists and am done with them. The Dr who has been the best for me is an internist. He put me on Plaquinil for nonspecific connective tissue disease. It has helped for both my OLP and mixed connective tissue or non specific. Just have to keep going until you find the right Dr who is willing to try something. I went to a neurologist recently who put it really well. No Dr really cares about you the only person that cares the most about you is yourself. So keep going and get as many opinions as you can. Medicine is not a perfect science!

@mmmerrimac I also have been to so many Drs of all different specialties. I think 5 Rheumatologists and am done with them. The Dr who has been the best for me is an internist. He put me on Plaquinil for nonspecific connective tissue disease. It has helped for both my OLP and mixed connective tissue or non specific. Just have to keep going until you find the right Dr who is willing to try something. I went to a neurologist recently who put it really well. No Dr really cares about you the only person that cares the most about you is yourself. So keep going and get as many opinions as you can. Medicine is not a perfect science!