Post-Visit Update
We are safely home from our visit to Cleveland Clinic. I've taken some time to sleep on the experience and process it a little bit. We were bracing, at least in theory, for another long road with appointments and tests and "normal" exams. But I think I had hoped for something different this time, that maybe they would look at all of my records and at my clinical presentation and make some kind of immediate pronouncement of my diagnosis. Of course, that was unrealistic...
We saw a neurology specialist first thing yesterday morning. I was handed an iPad in the waiting room and asked to answer some questions before seeing him. The first question was, "Are you here for facial pain or headache?" Those were the only two options. I felt a sinking feeling in the pit of my stomach and looked at Micah. We were seeing the wrong doctor. Our suspicions were confirmed when he joined us in the room a little while later and asked, very tactfully, how we had ended up in his office and not with another neurologist. We admitted we were as confused as he was. Things got even worse when he said he'd never received any kind of records, so he had no previous office notes, labs, test results, or anything to review. That meant that it was all down to the history I could provide in the office, and assumed he felt he could trust my relaying of what all has transpired.
In fairness to the doctor, he made the most of the appointment given a somewhat impossible situation. He spent almost two hours with us. We touched briefly on my fatigue, weakness, and all of the other symptoms. But since he specializes in headaches, we naturally spent most of our time on that particular symptom. Fortunately for all of us, I do have almost daily headaches, and at least weekly migraines. They haven't been well controlled on my current medications and they impact my daily life--they just aren't at the top of the list of symptoms I would call "debilitating." After a lot of discussion and another "normal" exam, he provided a plan for managing my headaches with a daily preventative medication and a new rescue med for migraines, as well as continuing physical therapy. He felt it was possible some of my other symptoms could be related to the headaches themselves. He asked to see me back virtually in three months, and wanted to refer me to rheumatology as well because of my history of significant positive ANA titers.
I'll be honest, when he left the room I struggled to fight back tears. I'm still not sure why. I was so frustrated with the situation: that we had come all this way to see the "wrong" doctor and that my records hadn't arrived for whatever reason prior to my appointment. He hadn't been dismissive of my symptoms, but also hadn't seemed to really take them into consideration. And we were nowhere near getting a diagnosis. It wasn't the visit I had hoped for.
Fortunately, there was an opening with rheumatology for that afternoon. We booked the appointment and decided to take advantage of the fact that we were already in town to be seen in person. We killed the few hours between appointments with lunch at a gluten-free restaurant and some site seeing, before heading back to Cleveland Clinic.
The rheumatologist was fantastic. She was personable and easy to talk to. She was thorough and asked great questions, and seemed to hone in on the things that have been most concerning to me. She did an exam (normal, as always), and had been able to pull in a few of my previous records. She also came up with a plan. I've been told for the past few years that I'm a ticking time bomb when it comes to another autoimmune disease. The doctor yesterday, as well as the attending who saw me with her, confirmed that there is likely more brewing from a rheumatologic standpoint that's visible in my lab work, but not in my physical symptoms (how's that for a reversal of my usual problem!?). For that reason, they recommended pulmonary function testing, an echocardiogram, some labs, and a chest CT. She also made a referral to a neuromuscular specialist if I would like a second opinion from neurology. She left it up to me as to whether I would like to follow up with her, or continue to follow with my local rheumatologist. But the door is open at any time in the future to go back to Cleveland. I loved her.
It was absolutely the rollercoaster we were bracing for (with many more loops and dips to come). I'm grateful for a plan that will hopefully get a handle on my headaches. While they haven't been the most bothersome symptom, they've definitely been impacting my life daily. If we can tackle and tame one symptom, it will make my life easier! I'm comfortable with the rheumatology plan, as well. I'll be following up with my local doctor for the time being, but if needed I am relieved to know I can always go back to her.
And there are so many other things for which to be thankful. We had great weather and a fun couple of days away together. We stayed with a friend's in-laws, a wonderful couple who were strangers to us but who went out of their way to offer hospitality. They welcomed us into their home, provided thoughtful gluten free snacks (and even packed us food for the ride home!), and sent us off to our appointment with hugs and prayers. What a beautiful gift. We had a little time to explore the sights around Cleveland, including a short walk/wheelchair ride along the water and a stop at the Christmas Story house between appointments. We ate wonderful food provided by gift cards from thoughtful friends, and even had a gift card for gas for the trip! And we received multiple messages, texts, and notes from friends and family who were praying for us and thinking about us. We were completely surrounded, at every turn, by love and support from others. What a gift!
