Monday, February 23, 2015
So much has happened this week. As you all know I went to Mayo Clinic in Rochester, Minnesota. It was such a great experience! All the doctors wanted to take the time to listen and solve the mystery. They loved questions and learning new things. Every single one of them reassured me that there was something truly wrong, and it was not in my head. As you all know I was hoping to go get a definitive diagnosis, and while I didn't quite get that I did get an answer. They determined that I have my own disease, that has not been discovered. The research is still very new, the doctor did tell me this is autoimmune related. The doctor also told me that she wanted me to be a part of research studies to help them figure out what it is I have. The cardiologist that we saw called it "The Emma". We still have several tests that we need results for, so we are still waiting for more info. They assured me that they will monitor me closely and if they see any red flags they will treat me with the necessary treatment, for example steroids and IVIG. After we get all the results in my doctor will call us and give us the medication part of the treatment plan. It was nice to hear the doctors say it was beyond just autonomic dysfunction, because it was worrying me that some of my symptoms didn't fit in, they however reassured me that although there is something else at play, it's not dangerous. It may be tricky to treat, but no harm will come from it. While I was there listening to the doctors, I just kept thinking about how celiac was first described in the 2nd century, but it wasn't until 1952 that a Dutch pediatrician named Willem Karel Dicke linked the disease with gluten. It took centuries to figure out just that simple way to stop it in its tracks. The treatment from then on is stop eating gluten, no side effects, no risks. People everywhere feel as sick as I do, but they have an easy fix, stop eating gluten. They will start feeling better, and the disease goes into remission. I just think about all those people who can be healing the damage, and feeling all better in no time, if it were me I'd want to know. And as far as I go, who knows maybe the medical community will discover my unknown disease, and the treatment will end up being as simple as not eating this particular food.