Our Winding Journey to Finding Rheumatologists
Since I've started writing and moderating for AnkylosingSpondylitis.net, I read countless stories about how difficult it is for AS patients to find rheumatologists. This was definitely the case for my husband, Keegan, who has AS. Between insurance, confusing Google results, and unbelieving doctors, it took a while for us to finally land on a rheumatologist. And a rheumatologist that we trusted!
(Note: One of the best sites for finding a rheumatologist is here on the Spondylitis Association of America's website.)
First: know you're not alone if it takes years to finally get the care you deserve
From the time Keegan had onset of symptoms to finally seeing a rheumatologist, it was a total of 7 years. He had been to multiple doctors, chiropractors, physical therapists, and other specialists only to be told he was tall so he should expect to have back pain. This seemed completely unreasonable as his symptoms gained more and more severity over the years. At one point, he was completely bedridden at 23. That's not just from being tall! So to any of you out there reading this, first know, it can take a while, but you deserve to find great care.
Finding the first rheumatologist
Once Keegan was actually diagnosed, our family doctor referred him to a local rheumatologist. When I called they said it'd take 3-4 months to get in to see the doctor. I didn't trust our family doctor after he told Keegan that he was exaggerating and making up symptoms, so I headed over to Google. At the time, we lived in Harrisburg, Pennsylvania, and could easily get to Philadelphia or Baltimore in a couple of hours. If Keegan was going to get the care and had to wait that long, then I'd find the best rheumatologist our insurance would cover.
I started my Google search with "top rheumatologists ankylosing spondylitis" and saw Johns Hopkins was listed. Only an hour and a half drive away, I called my insurance, and they were in-network! I couldn't believe it. Then came an important next step: I looked up a list of rheumatologists at Johns Hopkins and found the one who specialized in ankylosing spondylitis. This, to me, is key. Rather than just seeing anyone, I wanted someone who had an in-depth knowledge of the disease. I called and this doctor was taking new patients, so we booked an appointment.
Then we had to be patient
So we found a rheumatologist, but it was a 3-month wait. What now? Keegan had a diagnosis, but we just had to wait it out? Yep, but luckily Keegan had already started physical therapy. In the meantime, we collected all medical records to bring to his appointment. This included signing paperwork allowing our family doctor to send his medical record and getting a CD with X-rays. One note: when taking medical records to a new doctor, get the imaging on a disk. Often, rheumatologists will want to see the images themselves, not just the radiologist notes!
Since then, we've moved twice, and have to find another rheumatologist
We moved to Philly and back to Pittsburgh since then. That means we now have to find another rheumatologist. This will be the third we need to go to. It's a bit nerve-wracking now hoping that we can find another doctor who can help Keegan. I'm filled with a lot of worries. Will they listen to us? Will they spend the time his past doctors have to understand Keegan's history? What will their expectations and prognosis be?
If you have any tips or thoughts as we go through this again, let us know!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?