I spent the day today travelling to the Cleveland Clinic to meet with a new rheumatologist. He is supposed to have a tremendous reputation and I was referred to him by a local woman who is his patient and really admires him.
We got there almost an hour early, because it was sleeting when we left home and weren’t really sure about the weather conditions along the way, and didn’t want to be late for the appointment. They have you complete a very lengthy survey on an IPad and even with the extra time I had allotted, I hadn’t completed the survey by the time they called for me. After answering the usual questions and providing my medicines etc., the physician arrived to meet with me. He was very thorough, asking questions about the history of my disease and the medications I’ve tried along the way. For those of you who aren’t familiar with rheumatoid arthritis, there are a lot of newer medications called “biologics,” all with very similar side affects. Primarily, they increase your risk for infection and if you’ve seen any television commercials that reference these medications, they also have been known to cause lymphoma.
Both of my parents died from B Cell Lymphoma and I have had one of my artificial knees become infected, thereby making me very leery of these medications. That’s not to say that I haven’t tried them, I have. I haven’t had any good results and the last one I took several months ago, made me gain 30-35 pounds without any increase in food intake. Since I can’t exercise, losing this weight has not been easy, and it’s one of the reasons you rarely see me on video any more.
After spending almost an hour with the physician (which is almost an unheard of amount of time to see a doctor), he said I should consider another of the biologics. Which one, he wouldn’t recommend any. Rich asked for his top two choices, and he wouldn’t give them either. There was a long moment of silence so I asked, “so what would our next step be?” He said he couldn’t take me as a patient because I lived so far away, but he would be willing to write up a recap of our visit and forward it to my current rheumatologist. She’s a very nice lady, but she’s not experienced with my level of disease, which is why I was seeking another doctor with the experience necessary for my disease state.
My biggest fear in going to a new specialist is that they won’t take me as a patient. Of course, Rich said, they would. Especially since I had been referred to him by not only my primary care physician but also our local pain clinic. I’m sure the doctor’s reason for not taking me as a patient had nothing to do with the distance I travelled to reach him (since he has other patients from my geographic area.) I think it had more to do with the fact that I’m probably beyond his help at this point, and he didn’t want to tell me that.
I think by now you know me well enough to realize that it takes a lot to get me down, but at the end of the visit, I was disappointed and saddened that he wouldn’t give me the real reason that he wouldn’t take me as a patient. It reminded me of the movie with Jack Nicholson and Tom Cruise where Jack says, “You want the truth? You can’t handle the truth.” Maybe not, but I would have loved to have been given the option.