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

This is terrible what you are going through. I was a fool and stayed with an incompetent rheumatologist for 12 years. At least he was friendly.
Make sure you put a review on health reports or any other websites you can. I pray you will find the help you need. I pray you will feel supported and heard. I pray this new doctor makes you feel encouraged. In Jesus name I ask these things
🙏🏼✝️🩷🌷🌼🌺💛

I am in a similar boat 7 years later. I started out with a RA of the hips and spine label, then psoriatic arthritis, moved to axial spondylitis, and after 6 years and trialing many biologic drugs without any success, I sought a second opinion.

The new rheumatologist uncovered that I had steroid myopathy (I had been on steroids for all those years), adrenal insufficiency, and Tif-Gamma 1 antibodies - the other rheumatologist had never tested me for myositis despite complaining of right side weakness. Sometimes my ANA was weakly positive; sometimes it was negative. Positive ANA isn’t necessary to have an autoimmune disease! I am now in the “UCTD” category as well. Seeking another opinion was the best thing I ever did. The new rheumatologist has added a PT, a neuromuscular specialist, endocrinologist, hematologist, and oncologist ( Tif-Gamma is associated with cancer) to my team of doctors. I encourage you to find a second or even third or fourth doctor - keep looking until you find someone who really listens. Good luck.

I was feeling many of the same things, started looking at the meds I was on, and big surprise, many of them were causing the symptoms- even if a slight chance, when a body is exposed to several of the same symptom caused by meds, time to rethink them. Always look up the black box mention on these meds. and they often miss a few symptoms, because everyone is different. In general, our bodies are exposed to far too many chemicals, compared to just a few decades ago. Microplastics are a newer concern. Hope you find relief soon. Check the black box warnings. Make a list. Then make a Venn diagram to confirm what could be the source of your issues, or at least exaggerating them. I only recently learned that the statin I'm on has been causing my muscle cramping.
Good luck to you!

I'm sorry to hear you're having a difficult time with the diagnosis. I hope it can be resolved quickly so that you know what you are dealing with. I can empathize with how this makes you feel. Good luck with the new doctor.

@bimshire thank you.

@suzanne63040 ☺️ thank you

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.

@cynwin
So many people suggest “functional” drs. But insurance doesn’t cover them and they’re really expensive out-of-pocket! Some of us just don’t have the funds as we live on a small fixed income. I would love to see a functional doctor, but just CAN’T.

@pmdel
I absolutely agree with you. Perhaps you can look into an Integrated Medicine provider that can also provide traditional medicine. You may be able to have insurance cover at least some of the cost. Check with the practitioner & staff to determine if that would be possible.

@mmmerrimac thank you! It’s so horrible that doctors treat so many people this way. I hope your new rheumatologist is everything you could ask for and you get the help you need. It’s crazy when you go to a doctor because there is clearly something very wrong with you. Loads of symptoms and bad bloodwork and they still treat you like it’s in your head and gaslight you. It’s like, what more do they want?🫂