I called an Infectious Disease doctor group Friday to look at getting an appointment. The reason being — my cardio electrophysiologist really encouraged me during my last appointment to give the specialty of infectious disease one last shot at identifying the cause of my chronic swollen lymph nodes, fevers, fatigue, and post exertion malaise. Compared to two years ago when I last gave the infectious disease specialty a shot (twice), we have a lot more information on my body showing what is going wrong (whereas before we just had pages of tests saying everything was working great), and two more diagnoses. These symptoms are what started this whole mess and what often cause setbacks, and I still don’t know their cause. It is frustrating, but I have to say, after 6 years, I sort of just have accepted their inevitability and mysteriousness. There’s only one disease I have in mind that hasn’t been tested for, but maybe should have been (Toxoplasmosis).
When you have a mysterious illness such as mine, and you’ve had all the testing I’ve had, most doctors don’t have an infectious disease doctor they are sure would be a good fit off the top of their head. My cardio electrophysiologist won me over when he said, “Look into doctors and find one you think is a good fit.” While there was one center he’d heard good things about for pediatric patients (which I am not), he realized not just any infectious disease doctor is going to do the trick and he was playing to my need to be in control of my health care.
I chose this office because most of the doctors had at least two raving reviews online and it was only 45 minutes away. I figured the reviews give me slightly better odds than going by random. I had a doctor in mind when I called. However, I was told prior to allowing me to make an appointment, they required a referral explaining the situation in order to put me with the doctor best fit for my case. I think this could be a good sign. It’s also a good sign that I’ve spoken with two receptionists there and both were patient and friendly. There is one doctor’s office I go to where I am actually afraid of the receptionist, but I keep going because the doctor is great. I rehearse what I need prior to calling so I don’t mess up and test her patience. I know another patient who goes to this particular doctor who feels the same way. She also admitted to rehearsing prior to calling the office! 😛
This is getting way to long for a simple little story. Sorry guys.
So, back to the point! Late afternoon on Friday, I worked on getting in a word with the cardio electrophysiologist and my general practitioner about needing a referral and where to send it. At one today (Monday), the infectious disease doctor’s office called saying they’d gotten my two referrals and would like me to come in tomorrow! Yes, I have an appointment for tomorrow morning. If you’ve had experience with specialists, you know that is crazy fast to get into one (unless you’re dying). Talk about fast action! You often hear a lot of negatives about dealing with doctor’s office staff… but sometimes, the system works, everyone does what they are supposed to, and they do it quickly. In my case, THREE offices did all of these things.
I’d be surprised if they actually figured out why my lymph nodes swell and I get fevers… I’d actually be shocked…. but I am still hopeful for this final answer.