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.