Medical Zebra

In the past  month I have had two doctors tell me I was a zebra, I had no clue what that meant. I learned a little snippet about it, from a friend of mine and I googled "zebra patient", indeed the term zebra is used when doctors can't figure out the cause. There is even a foundation, Immune Deficiency a Foundation--Zebra Zone. www.primaryimmune.org In medical school the docs are trained to focus on the common signs/symptoms of ailments. There is a saying that goes something like "if you hear hooves look for the horses, not the zebra". The zebra is a patient that is very complex that they can't figure out what us going on. Doctors often shy away from the zebra, not because they don't care, but if they have to do research, it is in their own time and they don't get paid. When you see them at their office, they get paid the moment you check in, doesn't matter if you are there for 10 minutes or an hour. But you can't go to the doc office and expect him to research for you, especially if there is a waiting room full of patients. It is recommended to be proactive, and then go to your doctor to discuss your findings, possible diagnosis, and any questions or concerns you have. 

My former neurologist called me today. She read an article that made her think of me. She told me she was very happy I was seeing Dr. Hoesch. She was going to send him a message in regards to what we discussed. She wants me to go get labs drawn for Pompe Disease, which is not something they normally test adults for. It is usually diagnosed in childhood. It is an inborn error of metabolism disorder.  So, I will go have more labs drawn and cross one more possibility off the list. It is comforting to know that they care enough to think of me when they read articles and attend conferences, but on the other hand I wish I were a horse so I knew what I was up against.  I am glad there are no hard feelings and that there is a team of docs working together to try and help me.