I don't know for sure because I often find the Mayo Clinic scheduling system confusing and I've heard of others who've said they've "been patients for years," but in my experience, both in doing a workup at Rochester and a few years later at Jacksonville, in both situations, they were very clear that they only see patients for an initial workup. It didn't really seem to matter whether or not I had resources or providers at home who had the related expertise, but I guess the way they see it, they're not able to follow every patient. In releasing you back to your "local care team," they're able to use their resources and expertise in making the complex diagnoses and recommendations and allow others to "follow" us as patients.

@johnbishop had a great suggestion about asking your Mayo rheumatologist what she meant when she said they don't follow patients "long term."

The goal in both of my evaluations with Mayo was to establish a diagnosis and make recommendations for a plan of care that I would take home to my care team. I suspect the outcome would be different if it was a cancer diagnosis or something like that. In my case like you, I had my evaluation with Rheumatology at Rochester in 2017 and began a different evaluation for EDS in Jacksonville in 2022.

Your post caught my eye because I have seronegative spondyloarthropathy and I don't meet many people who have it--actually I've never met anyone else, except on Connect haha. I can relate to your experience of the Mayo rheumatologist being unsure of your diagnosis. When I did my workup at Rochester in 2017, they misdiagnosed me, concluding they had "low suspicion" of an inflammatory arthritis, and they were completely wrong.

I'm not sure if you may have the seronegative version like I do, but my rheumatologist at home explained to me that it's difficult to diagnose because inflammatory markers will usually remain normal, even when someone can have severe pain. Because it causes inflammation at the entheses (the insertion points of the tendons), that type of inflammation or joint damage may not be visible in imaging for years, without treatment.

So they often have to treat it empirically (meaning trial and error); if the symptoms are severe enough and all other potential causes within reason have been ruled out, they would start treatment and if symptoms improve, then it's an assumed spondyloarthropathy diagnosis. I was in a tough spot because the first line empiric treatment is high doses of NSAIDs but I couldn't do that because I only have one kidney. The second line treatment was sulfasalazine, but research shows it's not as effective for peripheral spondyloarthritis, which is what I have.

At the time I went to Mayo, I was still titrating the sulfasalazine, and if it didn't work (which it never did), the next step was a biologic such as Enbrel or Humira. The Rheumatology team at Mayo concluded that the risk of me taking a biologic was not worth trying. But months later I was in such severe pain, my rheumatologist and I decided to try Enbrel and I noticed improvement within less than two weeks.

Now, I have an assumed diagnosis of seronegative spondyloarthropathy. To your point, the kicker is that since I've been treated for it, there's no way to prove objectively with test results that I have it. But if we didn't treat it, the pain would have gotten worse and worse and worse, and my quality of life would have suffered. Maybe then, we'd see joint damage or an increase in my inflammatory markers, but how much pain would I have had to endure?

Anyway, I guess I'm sharing this story because universally the rheumatologists I've seen (3 altogether, aside from the rheumatologist at Mayo, plus I communicate often with my dad's rheumatologist) all said it's difficult to diagnose spondyloarthropathy. (It's probably difficult to diagnose any autoimmune condition that's seronegative or has non-specific lab values). The rheumatologist who diagnosed me was experienced with spondyloarthropathy.

I can only assume that when I was evaluated at Mayo, in 2017, maybe the condition wasn't as well known or it just wasn't something they saw often? I'll never really know why they were so skeptical and so wrong about my diagnoses (I also have other diagnoses they could have found but they completely missed.)

Still, it's very promising your Mayo rheumatologist seems to be thorough and is considering all possible explanations for your symptoms. I'm hoping for you that you'll both be able to come up with something and can find a local rheumatologist if needed to continue your care, who's also a good fit.