Today, I went for the neurology follow-up from when I was in the hospital in December. First, I prayed several times that they would lift the mask mandate at the office. You all know how I feel about the mask. I have Biblical, medical, constitutional, and moral reasons for not wearing the mask under the guise of covid, but that’s another post. When we got to the office in Hershey, we noticed right off that no one was wearing a mask. I asked about it while I was checking in. They said the rule was lifted last week! What a huge blessing! I have canceled so many doctor appointments over the mask, but felt that this appointment was necessary.

In December, I had trouble getting words from my brain to connect with my mouth. It was determined that I did not have a stroke, but that I did have a bead like appearance in my arteries. The radiologist suggested the diagnosis of FMD (fibromuscular dysplasia).

FMD is a build-up of cells in the arteries that can cause narrowing and thickening of the artery walls. If this were the case, it would be a new, unrelated issue.

However, FMD can be confused with vasculitis. Vasculitis is an imflamatory disease that affects the veins and arteries. The neurologist and rheumatologist already suspected vasculitis of my central nervous system (involving brain and spine). I have been on immune suppressants and aspirin for about a year because of this suspicion. The medication has helped greatly with my migraines, further indicating vasculitis.

The question is, is this finding of a beadlike appearance in my arteries FMD or vasculitis? and is it anywhere else in my body? FMD would be new and unrelated. Vasculitis is already suspected and often accompanies SLE lupus and myositis, which I have already been diagnosed.

Rheumatology did not want to make that call. Now, neurology is happy with how treatment is progressing, and would not make any changes for either diagnosis at this time. I could have several invasive test if I really wanted an accurate answer now, but he recommends just waiting until things get worse (like kidney damage or a stroke🙄) before pursuing those options.

When we got home, rheumatology got back to me about my labs. My muscle enzymes are a little elevated, indicating a flare of the myositis. She recommends a taper of steroids, an increase in immune suppressants, and a swallow study to see how that is doing (which may help determine which kind of myositis I have). Such fun.

For now, I feel fine. I’m tired and achy as usual. We will patiently stay in the “wait and see” phase for a while longer.