I Was A Mystery Patient
I was my doctor's mystery patient for a total of seventeen months or longer. Here is my story before I got diagnosed.
In April 2015, the lower right side of my stomach was burning. At that time, I did not have a good doctor. Since all the tests came back normal, he just gave up on me. For some reason, the burning sensation went away. I knew it would come back.
Burning sensation in my stomach
Three years later 2018, the burning sensation came back on my lower right side of my stomach. I had found a new primary doctor. She had listened to me the first day I met her. She gave me referrals to see specialists, bloodwork, ultrasound, MRIs, and more.
I had my first surgery by my OBGYN to see why I have pain in my lower right stomach. I had developed a big ball on my gallbladder. In March 2019, I got my gallbladder removed. I end up getting chronic cholecystitis. None of my doctors could tell me how I got chronic cholecystitis since I never had gallstones. My family and my doctors thought having my gallbladder removed will solve the problem and be pain-free. For me, I knew I will not be pain-free.
Burning in my neck and chest
A month after my surgery, I got the burning sensation on my right side neck. There are times my chest will be burning too. On June 9, 2019, I got my first inflammation attack. I felt my whole right side of my body burning from my head all the way to my right foot.
I saw my primary doctor the day after my inflammation attack. She was so shocked that this happening to me. She told me that she will do anything for me and she would not give up on me. I would see my primary doctor every month with new symptoms. The pain would be just on my right side of my body.
New rheumatologist diagnosed AS
My doctors end up nicknaming me "Mystery Patient" with a Big Question Mark. I saw a rheumatologist and I told her everything. She ordered X-rays. Once she saw the images, I felt she just gave up on me. She told me I just have arthritis and just do water exercise. She also told me that have no signs of AS.
I end up seeing my dermatologist because I had a big rash on the left side of my back. My dermatologist asked me if I ever saw a rheumatologist. I had told her yes and told her what the rheumatologist told me. She was so upset and she highly recommended me to get a second opinion. She told me that she knows a rheumatologist.
In November, I met the rheumatologist that my dermatologist recommended. The rheumatologist is amazing and he listens to me. December 13, 2019, I was diagnosed with ankylosing spondylitis. After I found out that I have AS, I felt super relieved. I cried tears of JOY. I am grateful for my mom and my sister who were the only ones been there for me. I am grateful for my five amazing doctors who never gave up on me. I am also grateful for God who is there for me and helps me.
Do you use the word disability to describe your AS?