I just passed my 2 year anniversary of my MS diagnosis. I thought I’d do a quick check in.
I’m doing really great. I’ve had no new relapses. The only continuing symptoms I have are fatigue and brain fog. Sometimes my legs will ache, but nothing like the pins and needles sensation I had at the onset of my last attack. I give God full glory for this!
I have switched from Tecfidera to an infusion medicine called Ocrevus. This is because the medicine does not stay in my system for as long but its effects last longer. I would like to try and concieve again sometime next year, so my neurologist wanted to see how I would do on this drug. We can time the pregnancy after a dose and then I will be partially covered for the pregnancy.
They start you off slow, so I had 2 half doses in February and go back for my second dose in July. After that I believe my doses will be every 6 months. The only side effect I had with the first session was some flushing during the treatment, a moderate headache, and fatigue that lasted for the rest of the day. I woke up the next day feeling like my usual self. For the second treatment, I only needed a short nap at the clinic, did not get near as hot, and wasn’t able to sleep at all the night of the treatment. We think that’s the effect of the steroids.
In the fall of 2020, I was diagnosed with fibromyalgia and began treatment with Cymbalta for that. That has greatly reduced any lingering pain I’ve had. I also began physical therapy for my shoulder pain. I plan to do the same for my hips/legs soon.
In June 2020, I had some abnormal liver labs. This was mostly due to being off my medication for diabetes for a few months with moving and Covid closing things down and having to switch healthcare providers in the middle of the pandemic. My doctor ordered a CT scan to check the liver, which looked pretty good. I have a milde case of Non Alcoholic Fatty Liver disease. My labs returned to normal with proper medicine. However, they also saw an adenoma on my adrenal gland and suggested I get an MRI of it. These incidental findings are very common and usually mean nothing.
For whatever reason, the MRI was not performed until January of 2021. A few weeks before the MRI, I started having shortness of breath, heart palpitations, and excess sweating. I’d be sweating up a storm walking from my car to my kids Tae Kwan Do class in 60 degree weather. It didn’t make any sense!
It turns out, that I have something called a pheochromocytoma. In addition to the symptoms already listed, it can skyrocket blood pressure, which it is now doing to me. The MRI saw the adenoma and noticed that it was bleeding into itself. Lab tests were performed twice to confirm that I’m making excess adrenal hormones, consistent with a pheo. I will have a Dotate PET scan on March 3rd. If the nodule has not miraculously shrunk, then I am scheduled for surgery on March 12. I am also beginning an alpha blocker to help control my blood pressure.
I’ve become increasingly more open about my faith. I am believing in and praying for a miracle. If it’s not God’s will, then I know He will be with me during this surgery.
I am also moving this week and have had some pretty bad headaches due to my blood pressure spiking. My productivity will be reduced for a little bit, but I hope to be back up to snuff quickly. I’ll also be homeschooling my children, so my schedule will be different because of that as well. However, they are no longer very young and are far more independent.
So, all in all, two years have passed since what seemed like the most defining moment in my life…but I’m happier and more fulfilled than I’ve ever been. If you or a loved one has been diagnosed with a chronic illness, please think positive! You CAN have a full life!