I had no direction from Dr’s. Through hours of research I would find new disorders that would be comorbid to my condition and research those. Each one adding a piece to the puzzle. I’d find out what scans I’d need, blood work, where to go. Call around till I found the place and then contact my family Dr. I’d bring him up to speed on where I was at in my research and he would write the order I needed to travel out of state to get my MRI’s, and CINE scan.
I first learned of Ehlers-Danlos Syndrome (EDS) through a local pioneer in these medical conditions. She paved a way for many. I wouldn’t want to do what she had to do, she has blessed so many who are walking in the dark here.
I sat and watched medical lectures from the experts to other Dr’s. Days worth of hours of lectures. I had to become an expert in my condition. EDS is the main cause to my instability. It is the cause of a lot of my medical problems.
Studying EDS lead me to discover Mast Cell Activation Syndrome (MCAS). MCAS made a lightbulb go on for me. It made all of my strange allergies make sense. I’m always discovering new ones. It made my awful pregnancies click. I was having an allergic reaction to the pregnancy hormone, which is why I immediately knew I was pregnant, and threw up the entire pregnancy.
With the combination of my conditions, my body is always in a heightened state of stress. I easily get hurt, bruise, bleed, scar. I easily have allergic reactions to food I use to not. Sometimes it just dependent on how much stress my body is currently under if I react to certain foods.
I am exhausted. So exhausted. I thought it was because of having kids so close together, the sleepless nights. Turns out I wasn’t sleeping because of my instability, I most likely will need a sleeping pill to sleep and may for life. I hope that’s not the case.
I wish it was the first specialist I sent my file to that helped me. It wasn’t the first or second but third. Truth is I felt relief, anger and frustration when the first Dr turned my case down. I felt like I was completely back to square one. The next specialist wouldn’t look at my case either. It left me with the option of leaving the country. It was my only hope.
I had to fly out of state to get more scans for him. It was an exhausting adventure. The ladies helping me during the scan were amazing. So patient and didn’t charge me for the hours of redos we had to do because I couldn’t hold my head still without the brace.
I felt hope sending my scans, and hours of paperwork off to the surgeon in Spain. I was told it would be 2-3 months till I heard back with a diagnosis. Waiting game is painful. A month into it I felt I should email them with an update of my deterioration during the previous few weeks. It was significant. The email was sent the Friday before Christmas. I found in my junk mail a reply dated the 31st of Dec 2019 with my diagnosis. I could not believe it! I shouldn’t have heard back till Feb.
I was diagnosed with CCI and Atlantoaxial instability. (AAI)
I had my Skype call with the surgeon the beginning of Jan, learned I was a candidate for surgery, put money down on it and got put on the schedule. We had our house on the market within days. It was our only way to pay for a $80,000 surgery.
One thought on “Medical Journey: Part 2 Becoming an Expert”
Oh friend, the desperation of knowing something is going on with your body but doctors unable to give clear answers is awful and lonely. You’re persistence and determination to research, learn, and keep searching is incredibly telling of your many heroic qualities. It will also help as you heal from the surgery ❤
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