Somewhat ironically, I've been writing on this topic everywhere, it seems, but my own blog.
My friend, Q, who writes at MedicalPuzzle, recently made her first trip to Johns Hopkins in search of a diagnosis after mystifying way too many doctors. But although she hasn't received a diagnosis, she has more clues about what's going on with her body than I've figured out about mine. She's participating in a study at Hopkins for people with suspected or diagnosed Sjogren's, and has an upcoming appointment with a doc who's apparently the only doctor of both neurology and rheumatology in the country. (As someone who also has been repeatedly bounced back and forth between neurologists and rheumatologists, that sounds like the perfect doctor to see for a medical mystery!)
The idea of traveling for a diagnosis has been one I've pondered almost back to the start of my mystery illness. And the longer I've remained a mystery, the more frequently my extended family has urged me to go somewhere like the Mayo Clinic, where there are all kinds of specialists and, most importantly, they work together to figure out what's wrong with patients.
But is a "destination" medical center really worth the money and the energy it would cost me?
I asked about this recently on MedHelp, one of my favorite forums. (Although for those going to check it out, my most positive experiences there have been in the communities for Multiple Sclerosis and Surviving Neurological Limbo Land-No Dx. I haven't found the same kind of support and response in other groups there I've visited.)
I also posted about it on WEGO Health, a really cool site for health activists.
And on top of all of that, I even sent an email to my favorite doctor blogger, Doctor D at AskAnMD, who kindly sent me a personal reply and then also blogged about it. (And I'm so far behind on my blogging thanks to my gallbladder issues that I'm just getting around to thanking him a month after his blog post. Ack!)
Here's Scott's and my thoughts about it (although it's of course my understanding of Scott's thoughts through many, many conversations we've had): If there were some sort of guarantee that I'd come home with a diagnosis and a treatment plan that would have me feeling better and being more functional, I'd do it in a heartbeat and the money would be very well spent.
But there's no guarantee. Of anything. And I've read posts in various places from so many people who have traveled to Mayo Clinic or other similar places at great expense, and gone home with nothing more than they came with. In way too many cases, I've heard about people getting labeled at Mayo Clinic with psychiatric issues (i.e. "It's all in her head" syndrome), something that some doctors who don't like being stumped like to toss onto patients they can't figure out. And yes, sometimes that probably is the truth. But not nearly as frequently as I hear of it happening.
I'm already depressed after three years of debilitating illness that remains undiagnosed. The last thing I want is to be labeled as either faking or psychosomatic, labels that some people I've met online have had a hard time shaking even when their mystery illnesses have finally become undeniably specific for diagnosis.
Meanwhile, I live in Portland, Oregon, which while not a megapolis like New York City, still has plenty of doctors of all types. If I were still living in Charleston, West Virginia, or Yakima, Washington, I would absolutely be traveling to a bigger city with more specialists. But Portland is home to a fairly reputable medical school and is known to attract doctors who like the quality of life they can have here.
There's the financial cost to that kind of search for a diagnosis, but I also have to consider the personal cost of my limited amount of energy. I fear that by the time I manage to get myself to whatever destination medical clinic I choose, I'll be exhausted and flared beyond being able to then spend full days seeing doctors and having tests run. I know it sounds silly, but I'm not sure I'm well enough to travel to find a doctor who can diagnose me.
On the other hand, my extended family makes a good argument when they say that I owe it to Scott and Ellie to try to get diagnosed in the hopes that it leads to a treatment that makes me better. I've already been on the sidelines for Ellie's preschool years, and she doesn't have any memories of being home with me full-time before I got sick when she was 2.5 years old.
I've learned over the past few years that it takes a surprisingly long time to diagnose many people like me, particularly those with autoimmune diseases. It seems hard to believe that I can be as sick as I am, symptom-wise, and still not have something that doctors can easily figure out and treat.
I will continue pondering this, but I'd love to hear from any of my readers about their experiences traveling for a diagnosis and/or how you made the decision to travel or not. Thanks!
1 month ago