So if you follow me or have read my story you know that I was miss diagnosed for most of my life. I don’t blame the doctors I went to who thought it was this or that and didn’t catch the Celiacs. The issues they thought I had at the time made sense at the time.
This post is because of conversations I had with people recently who questioned my doctors diagnoses,(there are 3 doctors, the 4th I will see on the 17th of this month) My new Rheumatologist thinks I have a form of Lupus, my old Rheumatologist tested me but it came back negative. The old one didn’t see a new symptom that I have and the new one did. So a lot of people think that because of my last test come back negative the new one is just trying to have me spend more money on tests and so on. At my appointment with my new Rheumatologist I just happen to mention my bald spot I have had on my head (I wrote about this). She said “You should see a Dermatologist”. Ok I said as we continued talking about my medications and issues. She kept looking and coming back to the bald spot, asking all kinds of questions. By the time I was done with my appointment she decided that I need to have a specialist look at it and biopsy it. Going to the University of Illinois Hospital on the 17th. I also found out Lupus can mimic fibromyalgia and even alopecia.
Now here is the issue I am having. There are some that feel I should just stop seeing all my doctors and just go to the Mayo Clinic and find a doctor there who specializes in autoimmune diseases. Now that would mean not only trying to get into the Mayo Clinic but getting there as well ($$$). Then there would be new test and basically starting all over again. I haven’t had gluten for almost 2 years. In order to test again I would have to consume gluten to get an accurate result. At least that is what I have been told. That is not happening!
This is my thought on doctors, they do the best the can with the information we give them and the education and experience they have. The doctors I now see are all specialists in their field. No one is perfect (except for House) and if he took appointments trust me I would try to get one. My doctors don’t rush me, they listen to my questions and concerns. They ask me questions and I never feel like I am being hurried out of the office. I also have learned to go into my visits with questions and concerns listed on a piece of paper. This is so I don’t forget something (because I do from time to time) then do that “Duh, I should have asked that” thing on the way home.
So with all that being said I am very happy with my new doctors and how I am treated as a patient. And that is important to me. So for now I’m good.