Coping with fragmented medical care. Ideas?

[Melisande]

Does anyone here have any experience finding coordinated care for a rare disease or complicated condition?

I was diagnosed with "Autoimmune Inner Ear Disease" about 1 1/2 years ago. I'm becoming increasingly frustrated with the medical treatment I'm receiving and am not sure what to do about it. It would be easy (or easier) if I were a multimillionaire and I could just pay my way to a nationally known clinic like Mayo or House Ear in LA. But I'm not and my insurance does not cover any out of state medical care.

Where I stand now is that I have a firm diagnosis from a specialist ENT (an otoneurologist) and a confirming second opinion from another otoneurologist. About 14 months ago, I started taking immunosuppressant medication that I have been tolerating very well (no side effects) and has apparently stopped the disease in its tracks. The medication is prescribed and monitored by a rheumatologist, not by an ENT. And here is where I am running into problems.

Both specialist ENTs I saw told me I needed to find a rheumatologist to prescribe this medication, since they wouldn't do it ... at least not medium or long-term. However, they refused to refer me to a rheumatologist themselves. They had no one to recommend. So, both on my own and following the suggestions of my PCP, I called quite a few rheumatologists who in turn simply refused to take me as a patient -- because they had never even heard of this disease before. In fact, I never succeeded in finding a rheumatologist with any experience with this disease, but I did at least find one willing to take me on as a patient and prescribe this medication anyway. Not an ideal state of affairs.

I don't want to make this an overly long and complicated post. So, I'm going to simplify. Now this rheumatologist is starting to get cold feet (as well he might since I'm the first patient his ever had with this strange malady) and doing more and more hemming and hawing when I see him for refills.

I had the bright idea of calling the specialist ENTs (otoneurologists) back to see if they could help answer my rheumatologist's questions about this disease or at least help in some way. I did this today and I have to say I had a most frustrating conversation with the ENT I thought would be the most helpful. His nurse basically told me that "autoimmunine inner ear disease," being an autoimmune disease is not their speciality. It is a rheumatological specialty. The rheumatologist is my primary specialist and they are only here to deal with the effects of the disease (the hearing loss) not the disease itself. I told her: "Well, believe me that is news to the world of rheumatology, since not a single rheumatologist I have spoken with has even heard of the disease."  Do you have any idea how I can find one who does? Nope. No idea whatsoever.

So, what do I do? I have done a lot of research on line and all the detailed discussions of the disease and treatment I find seem to be on the websites of ENT practices and clinics, not rheumatologists. (Unfortunately, none of the on-line resource I've found about the disease are in my state.) Why is it that in my city all the ENTs have apparently decided this is not "their" disease? Whose disease is it? And how do I find good coordinated care? For the record, I live in a metropolitan area of 4 million people and apparently there are only 2 otoneurologists serving the area. I live about 2-4 hours from two other major cities.

Ideas?

[Dollar Slice]

Ugh, I feel for you. I think you run into this problem a lot with difficult autoimmune stuff because they feel like they can always pawn you off on another doctor.

Have you tried a medical school? My mom (who has gone through two decades of weird and undiagnosable autoimmune issues) has been treated very well at a couple of different med schools. I wonder if doctors who are more into teaching and learning would be more interested in unusual cases? They even used my mom in a presentation to students (with her permission, of course) because her condition is so rare.

[Abe]

I agree with getting a referral to the closest medical school, there will be someone willing to take on your case. They will at least know a colleague somewhere with advice.

[VeggieGirl]

I second and third the look into the medical school option. They're much more on the cutting edge of what's going on than private practice. If not, then keep trying to find someone in the next biggest city over. My parents, who live in a small town, were dealing with some medical issues and they finally got it under control by seeing the doctors at Stanford, a 4 hour drive one way for them, but well worth it.

[wenchsenior]

I'm in this exact same hell right now, only being 'treated' (if you can call it that) at a large research and teaching hospital in a sizeable city.  6+ years of freaky autoimmune or endo type symptoms, no firm diagnosis, and I just keep getting referred in a circle from GP, to endo, to neuro, to rheumatologist every time new symptoms develop.  I'm at my wits end, seriously, and considering trying the Mayo Clinic. 

I feel for you SO MUCH.

[Melisande]

Thanks all for the responses. I am taking action based on your suggestions (and have had a little bit of success so far). I would write more, but my father died a few days ago and am starting to really feel it today (guess I was a little in shock before). Hard to focus, even when you know you need to do it for your own health.

Thanks again ...

[ysette9]

Do you have Kaiser as an option or can you move to a nearby state that has Kaiser? The doctors there are very motivated to work together since they are all part of the same organization.

[Abe]

I bet you've done this but is there an website catering to people with your specific disease? That is sometimes helpful not just in getting a specialist but for support in general.