Strategy Shift

My son has discovered the root of ME/CFS. No, I’m not kidding. My 20-year-old, on-his-second-gap-year kid is as stubborn as both of his parents put together, and is at least AS smart, if not smarter, than both of his parents put together. He also has a very elastic brain, which allows him to pull together concepts and realities that his middle-aged parents can’t get to. He’s a gifted diagnostician and has the perfect bedside manner. He is gentle and kind and knowledgeable.

Here’s an example of why I trust him completely:

As my pile of symptoms built and increased in ferocity in 2017 and early 2018, he started researching what was going on. He was scared. (We like each other a little.) He determined that some of my symptoms could very likely be caused by pressure on nerves in my cervical spine. He declared that as a Part I diagnosis.

I had an MRI in May 2018 that showed disc degeneration, but no pressure on the nerves of the spinal cord. My heart broke. As absurd as it sounds, I had just known that my spine was making me sick.

I don’t remember ever having pain in my neck, but I’m not sure if that’s because of my ridiculous memory or because of a misunderstanding with the doctors.

At any rate, I jumped on the chance to have ACDF surgery. (In fact, a year ago today was my long pre-op day.) My heart was still broken from the diagnosis, but I would have let anybody do anything if there was a tenth of a percent chance something might get better.

When my neurosurgeon got in there, guess what? Pressure on the spinal cord, pressure on nerves, that had not shown up on the MRI.

So, my kiddo’s credentials may not be on a diploma, but his gift for diagnosis is as real as any piece of paper. I could give a dozen other examples, but this was the biggest one. He caught something the radiologist, neurologist, and neurosurgeon had missed.

Now, in the past few weeks, he has dug deep into my medical records and current symptoms and current medications, and has a straight line to what’s going on. I had him write it up and save it on the cloud so that his theory is date stamped.

I’m going to try visiting my neurologist before my scheduled September appointment to ask for tests the kiddo and I have determined would best show the bright spots we’re looking for.

As I’ve said before, I’ve been on my CPAP (BiPAP) since December 4th. 170 days. I have missed two days…. (forgot a part when we went to California at the beginning of May – had it shipped ASAP) and my improvement is not what was promised. The CPAP was supposed to fix everything, and while it has helped many things, I’m far from well.

I’m setting aside research now. Why reinvent my son’s wheel?

So, I will shift the focus here to day to day functioning with this miserable disease until I can get my neurologist and, hopefully, a neuroscientist to give me a PET scan and an MRI with contrast.