I’m sorry for the delays posting an actual update regarding my most recent Neurology appointment. There were a lot of things that held me back from posting right away. The first thing was simply I was overwhelmed with emotions, information, and potential outcomes. I needed to process everything in my head before I could put it here, or I would have just been streaming nonsense to all of you. My mind just wasn’t clear enough to properly express my thoughts. The second reason was much more primitive in nature. It’s high school playoff season in Wisconsin, and my (step) son is a Senior on the defending D3 State Champion football team. Last night, Friday, was their Level 1 game, and I get sidetracked by these games every year. You’d think I was suiting up to play if you saw me fidgeting all day, but I love football, I love the kid, and I love this football team. They won in convincing fashion, and next Friday I’ll try harder to get here and post, but no promises, as my tension grows throughout the playoffs.
I was very concerned that we were just walking into another Neurologist office, getting the same exam, and we would be treated the same dismissive way we have at the other two previous Neurologist exams. The appointment was at 3 PM, and according to the email reminder, it was scheduled for 30 minutes. All day I kept wondering what was in store, imagining the disappointment I would feel if this visit did indeed go just like all of the others. I wanted to be prepared for it, trying to stay positive before anything had actually taken place. I was practicing for the worst case scenario, instead of imagining the best possible results.
As we headed to the appointment, I was nervously looking out the window, mind racing. I was distracted by new images on the way. New billboards and new construction guided us there, and I realized how long this has been going on. 8 months? I stopped driving 3 months ago, and my world suddenly got much smaller. It was always great to get out of the house and see things I haven’t seen in a while, but it’s also exhausting. The sudden realization that I had unintentionally become a partial recluse was alarming, and added to the stress that had been building up in me for the previous 24 hours. We pulled into the Physician’s office building of a very large hospital in Milwaukee, and Meghan, my supernatural wife, pushed me to the suite where my appointment was scheduled. We were 30 minutes early and that made me comfortable. We just sat, waiting, and finally, a nurse came to take us into the exam room.
The nurse was fantastic. She had a bright, bubbly personality that immediately dropped my defenses and made me relax, which was needed, because I was incredibly nervous. She left the room after reviewing my medication list (which is not a short list), and checking my blood pressure, letting us know the doctor would be right in. I think he was in the room within a minute, and I immediately knew I was in for a different type of appointment. The doctor was extremely friendly, introducing himself to me and my wife before taking a seat next to me. He carried with him a file folder with all of my recent medical records, and explained to us that he had spent quite a bit of time reviewing them, and let us know right away that my case was not a simple “examine and diagnose” situation. It was, in fact, a very complicated case. It made me feel good, not the complication of my case, but the fact that a doctor, this doctor, was acknowledging this fact up front. He then told us that he wanted me to explain what was going on, what I thought and felt, and I did just that. I slurred through my whole story, and then he started asking questions, not just me, but Meghan too. After an hour of an “interview” style appointment, he was ready to see me in action.
He wanted to see me walk, which meant I had to stand up first. I had been sitting in my wheelchair for an hour, and standing up is one of the hardest things to do. He watched me do it. He saw the struggle. He watched me walk, turn around, and walk some more. I sat on his exam table, no easy task, and he did some simple reflex checks and examined my nerve sensations on different parts of my body, and that was it. The exam was over….almost. Once I got back into my chair, he watched me struggle to put on my socks and shoes, and observed as I tied them like a young child who had just learned how.
He did not make a diagnosis, but he did rule out some major possibilities, including MS, ALS, and Parkinson’s, and it was the first time a doctor had done so. I had previously been told MS was ruled out, but these other diseases were still hanging over my head, and I was extremely relieved when he told us that. He then laid out the plan moving forward:
A CT scan of my chest, to check my Thymus for thymomas, a tumor that is usually not cancerous, but is almost a sure sign of Myasthenia Gravis. If found, they can remove the Thymus which could/might lead to remission down the line (scheduled 10/23).
An exam with a Movement Specialist, another Neurologist who will offer a different perspective and specializes in weird things like I’m going through (scheduled 10/27).
Blood work, lots of it, with different tests ordered by 3 different medical professionals (I’ll have blood drawn on same day as CT scan)
After all of this, these Neurologists will work together to determine a plan, and hopefully start some treatments. I feel like Dr. House and his team are now in my corner. It’s amazing to feel like there actually might be an end in sight. My spirit is once again lifted and I look forward to the next steps. I’d like to thank everyone involved with this process, from the friends that made the original request for help to an amazing doctor, to the actual doctors currently on my case and all of their assistants and nurses. I am blessed. I continue saying it, and I won’t stop.
I’m going to continue posting here, as often as possible, but I have started working on another writing project, and I tend to get easily sidetracked. I love posting on this blog, and I promise to keep it up. Please keep reading! Thanks for all of the support, prayers, and kind words!
Favorite song listened to during this writing: Island In The Sun – Weezer
Total writing time: 2 hours! (1144 words)