the autoimmune professor

Part 2

The next week which is really only a few days later, I start waking up with low grade fevers, usually 99.8 to about 101.0. I don’t feel sick, but I go to see my GP and he does a ton of different tests, covid, strep, flu A and B, and everything comes back negative. He says you either just have a viral infection that doesn’t have any symptoms or you are experiencing your first real “flare”. Since I am going to the rheumatologist in two days, he says call me if anything gets worse and just rotate ibuprofen and Tylenol for the time-being. I do that, but my fever stays without ever breaking. I head to see the rheumatologist who basically tells me I am in a flare and that I will need steroids to break it or I can ride it out. I had heard how bad steroids were for you and since we were trying to do this completely naturally, I really did not want to add any drugs if I didn’t have to. So, he sent me home with a prescription of prednisone and told me to take it if it gets worse. Luckily, it never got worse, but I did have that fever for 10 straight days and I noticed that I was getting fatigued very very quickly. Much more so than I ever had before.

After the third round of testing, the rheumatologist called me back and said that my labs were only getting worse, but that every time we run tests, something new pops up, a new immunoglobulin that I test positive for or something else will now be abnormal and so he wants me to seek a second opinion before he starts any type of treatment, because he is worried that while I most definitely have mixed connective tissue disease due to all the positives, some of the symptoms are overlapping and he is not quite sure that I have lupus, but maybe something else. So, I make an appointment with the best rheumatologist in Chicago who works out of both Northwestern University and Rush University who also happens to be an expert on lupus. I send them over all of my test results, all of the doctor’s notes, etc. and they make me an appointment for two weeks later. Normally, trying to get into see a specialist takes forever, but something in my test results keeps jumping out and the doctors are getting me in very quickly.

Two weeks later, my husband and I are at Northwestern (one of my graduate school alma maters, I’m really proud of that LOL). The doctor is great and he has looked over all of my stuff, he also is unsure about the lupus, because again I do not have any pain; however, I keep testing positive for rheumatoid arthritis and I do not have any symptoms there either. So, once again, they do a full check-up and draw blood to do testing. This time, they take about 13 vials of blood as they are going to check for absolutely everything that they can at the time and set up another appointment in three weeks after they receive all of the test results back. At the same time all of this is going on, I have started having sores break out on my head that look very much like psoriasis. I have the rheumatologist look at the back of my scalp and he said it looks very similar to both psoriasis, but also to discoid lupus and tells me that I should go see a dermatologist to have a biopsy taken.

The next day before I even have time to call a dermatologist, I receive a call from a local dermatologist that is part of the Rush University system in Chicago and tells me that I have a referral to see them from my doctor in Chicago. This is great because while I live very close to Chicago, it is so much easier when the doctor is less than five minutes from my house. The dermatologist makes me an appointment to see me in two days. I am trying to keep my stress down, but I am really starting to worry with all of these doctors getting me in so quickly. I go to the dermatologist and he looks at my head and takes a scraping of it. He does not want to do a punch biopsy because it is right in the crease in that little spot toward the nape of your neck and he is worried that by moving my head, laying down, etc., I would pull the stitches which would not be good apparently. While I am there he also decides to do my yearly skin check which is great because it was time for that anyway. Unfortunately, he found three spots that he needed to biopsy as he did not like them at all and wanted to remove them. I head home with stitches anyway and even more stress than I had before.

I should also add that by this point, I am sleeping approximately 15-17 hours throughout the day, but never more than 4 at a time. I get up constantly to use the bathroom (I am always thirsty) and at that four-hour mark I am wide awake, but usually only for about an hour and then I am exhausted again.