Mary, my complex care coordinator, has been working hard to get me seen at the Mayo Clinic in Rochester, MN. They are the best motility center in the country. She was making great progress. We had gotten me to the point where I had been assigned a doctor and they were beginning to send me travel information. And then this morning, the axe dropped. I got a message saying that after reviewing my extensive records, there was no test, or treatment that they could offer me.
I was disappointed, of course, but it makes sense. My team of doctors from Vermont, Stony Brook and NYC, all ran all of the appropriate tests to rule everything else out first. Ultimately, I was diagnosed with a Smart Pill, which is the state of the art test. And my results showed that I have severe gastroparesis. Severe enough, that even if you cut my transport time in half, I would still have severe gastroparesis. And as there is no treatment or cure for gastroparesis, there is nothing more that they could do for me than is currently being done
In other words, I just got a free second opinion from the Mayo Clinic confirming my diagnosis is correct. And that, as much as there is no treatment for gastroparesis. only symptom management, he has handled that correctly too. Thus is life with a rare, incurable disease. Welcome to the frustration that is my existence.
Yes, there are some marginal interventions available for gastroparesis, like a gastric stimulator, or surgery to prop open your pyloris valve. However, neither would make a difference in my situation. They don’t tend to work well in cases of idiopathic gastroparesis like I have.
This is not the end. I see it as simply a confirmation of my diagnosis. Moving forward my goal continues to be on improving my quality of life. I still have my slew of GI appointments on my calendar to help me address my acute misery and feeding issues.