Not that I don't have faith in #25. However, way back in the beginning of seeing him, the subject of mitochondrial disease was raised. I asked him outright if he thought my condition may be mitochondrial in origin and he outright said "yes". So way back in December, I started the search for #27. We'll call the prospective (and elusive) #27 "The mitochondrial disease rule-out guy (or girl)". I like short, snappy titles.
#25 gave me the name of some super-duper expert dude who literally wrote the book on this stuff. After a couple of false starts (#25 spelled his name wrong) I tracked him down just before Christmas. Bizarrely, I ended up through to his voicemail, and I left a message. Not surprisingly, I didn't hear back. So Christmas was bearing down on everyone, and I figured there was no point in pursuing it right then.
So this year, I tried again. I couldn't get hold of super-duper guy. I finally got a receptionist or someone on the phone and she told me that super-duper-wrote-the-book guy no longer sees patients. He concentrates on research. They do have another doc who specializes in this stuff. Great! I ask for an appointment with him. Then they tell me that this other guy doesn't take insurance, and he won't diagnose and refer. Many specialist docs like geneticists don't treat on an ongoing basis. They will diagnose (or rule out) and refer you to someone else for ongoing treatment if needed. I would be fine with this plan as it is a fixed cost, and because it would be a trek for me to see this guy on an ongoing basis. I would like to be referred to someone closer to home. However this particular guy was planning to charge the Earth with no hope of a referral to another doc and therefore I decided to pass. I am already shelling out big bucks for #26, who does not take insurance, and I can't afford to do it twice.
A friend-of-a-friend-of-a-friend has a mitochondrial disease, and through them, I found a woman locally who specializes in this stuff. Great! I call the office. She only sees pediatric patients. No exceptions. I ask if there was another doc in the practice who dealt with adults. "Yes" I was told. So I give all my details, set up the appointment, and the receptionist makes some comment which raises a red flag: "Does Dr X specialize in mitochondrial disorders?" I ask. "No he is a general neurologist" I cancel the appt. I already have two general neurologists on the 'current doctors' list and I have seen several others in the past. With the possible exception of #25, general neurologists are of little use to me.
I asked some other docs if they knew of anyone who works in this field; including my PCP, #25, my cardiologist and the alternative medicine guy. No-one knew of anyone.
I tried Googling and searching and came up with nothing except for super-duper-wrote-the-book guy who but doesn't see patients. So I hit a wall.
Well, I was at the rheumy this month, and I mentioned the mitochondrial thing to her. She seemed intrigued. I asked her of she knew of anyone who may be able to rule it out or in. She gave me a name. Great! I called the name: Dr. L. He is not my guy. But his staff suggested a Dr S. I call. Dr S could help me, but is not seeing any new patients in that office. If I travel 100 miles to get to his other office waaaay in the wilderness of a NYC burough -as far as it is possible to travel away from where I live and still have an NYC ZIP code. I pass on that option.
So his staff suggest I call Dr. R. However, when I call that office, it turns out Dr R is a general neurologist -no good. So *his* staff suggest a Dr M. (are you keeping up here?) I call. Dr M is out of town but they will ask. I call back the next week: Dr M had been back in town, but is off again this week -no word about my question. They have no record of me calling before, but they will leave a(nother) note. I will try again next week.
So almost 5 months later, I am still searching for #27. You know, I would understand this to an extent if I lived in a rural, backwards or sparsely-populated community. But the doctors I was calling are all in New York City! What is up with that?
I will let you know if I ever find the elusive #27, but it seem that mitochondrial disease specialists are rarer than the Californian Condor. Or maybe rarer than the Great Auk. Maybe I will die old, still searching for the elusive #27, an obsessed and embittered woman...
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