Tuesday, August 3, 2010

Would You Travel For A Diagnosis? And If So, Where?

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!



Joan said...

Here are my thoughts.

I lived in a horrible place with Andy for 2 + years and then found myself networked well enough to ask someone I trusted and whose professional opinion was one of the best, the question, "If this was your child, who would you go to? What would you do?"

He suggested two doctors and I screened the clinics. And then, Andy and I went, alone, on Mother's Day weekend to Baltimore, MD to Kennedy Krieger Institute, a subsidiary of Johns Hopkins University.

To this day, that trip is probably the single best thing I did for Andy. He received the diagnosis of autism....landing squarely in the middle in all of the evaluations. That trip changed how we viewed things, how we supported him, and how we got to a successful place with him.

When Mom was ill, I was ready for an out of town, second opinion. But by the time she was ready for a second opinion it was 1) too late and 2) she was too tired.

Why did I want that?

In both situations, I wanted a fresh perspective. A fresh set of eyes who were not constrained by location or politics.

In your case, I offer this: the average time from symptomatic onset and diagnosis for something as "simple" as Celiac Disease, is 11 years. I know you know this.

I am not unconvinced that a fresh set of proactive eyes would not be a bad thing. Even without a "label," you may find a new direction for a treatment plan.

Sometimes the question is not so much whether the ROI is worth it in dollars as it is whether it is worth it in emotion, worry, and ability to wipe the slate clean and move forward.

Another consideration is that your current set of folks are not working as a holistic team. They are working in silos that empty into your internists office. They do not benefit from the team discussion in real time. There's a lot to be said for that. Having worked on nutrition support and stroke teams, I can tell you we were all better for the teaming element. The discussions of difficult cases were tough and rich with intellect and challenged us to do our research before we sat down. If we didn't know something, we needed to be able to share what we learned in the attempt and why that didn't fit the situation.

I think that is priceless.

Of course you risk being told that there's nothing clinically there. When I took Andy to MD, I ran the risk of being told he was "severely mentally retarded," which would have been been far more devastating than autism. We didn't leave with a "treatment plan." We did leave understanding a bit more that led to a new path for research and, over time, a list of "what works," and "what does not work." In my mind, the benefits of the teaming and the creation of a "what works/doesn't work" document is a helpful thing - so you're not re-testing and re-testing the same things.

It's all very exhausting for all of you! I wish I could make it go away with the waving of one of Ellie's wands.

To me, the greater risk to consider, regardless of what you choose, is emotional rather than financial. There's a great emotional risk with both sides.

queenofoptimism said...

Hi Aviva,

Wow! Your post really got me thinking about your situation and mine, too. Based on my recent experience and where I'm at with going back to Hopkins, I do have advice/an opinion to share with you.

I think you know I don't like to give unsolicited advice but I think you're soliciting it in this case. ;)

Explore visiting another facility before making a commitment to go. See who you can talk to at the facility about a possible visit so you can make an informed decision. You know my experiences so I don't need to rehash them here. I just know that I would never have gone to Hopkins, even for the study, if I didn't first have a lengthy conversation with someone from the program so I could determine the value of going. Maybe the best place for you is nearby. Maybe it's far. Big or small.

Either way, a medical facility in itself is not a magic answer for anyone. Unfortunately!! I'm sorry that some people in your life think it is. I can empathize, I've had the "you just need to go to Mayo..." comment more times than I can remember.

As always, I am thinking of you and sending lots of hugs and good thoughts your way!!! Best wishes with the new neuro.