This part of the story should begin with my account of the search for insurance on the government web site, but that is a subject that causes great debate. I don’t want to get into that at this time. I’ll hit that subject in a later post. I want to focus on getting to diagnosis. As I said before, from the moment I finally went to the doctor to diagnosis, it took four months. That seemed like a lifetime to me. I hate not knowing. Sitting in limbo for any amount of time makes me crazy, but from what I have heard, four months was a relatively short amount of time for a diagnosis in the case of MS. Many folks I’ve talked to spent years suffering with symptoms before a positive diagnosis. So, I guess I can count myself lucky. Ha! Lucky! Well, you’ve got to find bright sides somewhere in the midst of suffering from a currently incurable disease, right?
“Your symptoms can be….”(Fuck! There goes the loss of the word I want to use here!)….indicators! That’s it! “Your symptoms can be indictors of the presence of MS, so I want to schedule another MRI focused on the brain, and then refer you to a neurologist.” was the place I was left after my last visit with TEE. So, I find insurance, (story for another time), and find a neurologist in my network. Knowing I was nervous as hell, Jen, once again, accompanies me on my first trip to the hospital where I will be getting my next set of MRIs. THANK YOU JEN!!!!!
Before going to the neurologist, though, I did exactly what everyone told me not to do. I went online to look into MS. Most of what I found was pictures and stories of people in wheelchairs, on crutches (the ones with the arm cradles up near your bicep, like the ones Tucker used to fake his disability in ‘There’s Something About Mary), or using canes. Great! That’s going to be me soon, right? What else was I to think at the time? That was what MS did to a person. Looking online, I was making the situation more and more unnerving. The click, click, click of the rollercoaster seemed to get louder, and more foreboding. Any time I thought about it, my stomach would lurch waiting for that next downward drop of the rollercoaster ride. And I thought about it a lot. To be honest, I really don’t remember about thinking anything else at the time.
Well, off to the experience of another MRI. At least this time, I wasn’t going to have to try to keep an eye unmoving. This one was going to be on my brain. That’s all. Just a look at my gray matter. No big deal, right?………Crap.
Luckily, these MRIs were done in the same facility as the neurologist’s office, so I only had to wait a couple of days for an appointment when we would be discussing the results of the pictures of my brain with my new neurologist (Try to say that five times in a row quickly! New neurologist, new neurologist, new neurologist………). The date of my first visit with a neurologist is now set, and all I have left are a couple of days of ‘click, click, click’ to deal with. Or so I thought. I mean, geez, when I was a kid, we would go to the doctor, he would tell us what was wrong and send us on our way with a prescription. Done. That’s how I remembered it. Not the case, these days……..at least, not for me.
Side note: I have an elderly mother, who had been dealing with her own major health problems recently, so I hadn’t told her anything up to this point. Why worry her if everything turns out to be something simple, right?
Okay, back to the rollercoaster ride.
We didn’t sit in the waiting room for long at all. (Just a little advice for those not used to booking appointments at a specialist. Book an hour as early as you can handle pulling yourself out of bed. Sure, you might not look or feel your most attractive, but it gives them less time to get backed up on the daily schedule, which means you usually get in on time.)
We are now sitting in the examination room, and as the nurse takes my blood pressure reading, I’m hearing the ‘click, click, click’ of the rollercoaster in my imagination leading up to the bad news I’m expecting to get when the neurologist arrives. My wife is trying to remind me of everything I need to tell the neurologist regarding any symptoms I’ve been experiencing, but still I’m only hearing ‘click, click, click’ with every word she says. (Sorry, babe!). Finally the clicking is replaced with a knock on the door. “Here comes the downward drop.”, I imagine. Shit.
The specialist enters. She introduces herself. Her voice is soft and pleasant, but I actually have to keep a chuckle from escaping my throat due to her name. I haven’t asked for permission from her to give her name, but I’ll just say it rhymes with gong, and can represent both the sound a gong makes, or be used as slang for male genitalia. Yes, I know it’s juvenile, but to this day, I still have to try not to chuckle when I say her name. I have a 13 year old’s humor. What can I say?
She boots up a computer and says, “Well, good news. I see no lesions anywhere on these images.” Lesions are evidence of the damage MS can do on the brain and nervous system.
What!?!? None! Yeeeessssss! The ‘click, click, click’ is over!
“But, that doesn’t necessarily mean we are clear, yet.”
Crap! ‘Click, click, click’ continues.
“But it does look good! I don’t think it is MS from what I am seeing here, but I still want to do some more tests, just to rule certain things out.”
Now, this is where it’s an amazingly wonderful point in time to have my wife with me. Jen informs Doctor Rhymes With Gong of the tests that have already been done. I would have forgotten to mention that. We are instructed to have them sent to the neurologist’s office. After discussing which tests had already been run, which showed no evidence of MS, I’m presented with the option of having a spinal tap performed. ?!?!?!?!?!?!Yikes! The rollercoaster just took a sharp, unexpected, bone jarring turn! My first thought was, “Crap. We are turning this shit up to 11!” Nigel Tufnel would be excited.
You see, at this time, the only person I personally knew that had a tap was a drummer whom I had worked with for over a decade. His tap was performed when he was young, sometime back in the early 80s, if I remember correctly. He had nothing but horror stories about how painful it was. He even told me he had prepared himself to possibly not survive it, and had said his goodbyes to his loved ones beforehand. They all filed into his hospital room like a literal version of his life passing in front of his eyes. Therefore, I was terrified at the idea.
Doctor ‘Gong’ obviously saw the horror that clearly showed on my facial reaction to the words ‘spinal tap’ and immediately reassured me that the procedure was not the horror story I had probably heard it was. By no means was it something you would just decide to do if you had an afternoon free with nothing else to do, but no longer was it the torture that it used to be. She told me to take my time deciding, but that it would most definitely rule out MS. That way, we could move on in search for the real culprit.
Somehow, I have no idea from where, I had the courage to immediately say “Let’s do it.” I wanted the MS idea off the God damned table, and this was the best way to do it.
Another side note: After this visit, I told my mom and sisters my situation, but that the brain scans showed no signs of MS. My mother’s response was…”So, there is proof you have a brain! I wasn’t completely convinced until now.” Love you, Mom!
After discussing it with Jen, who wasn’t nearly as gung ho as I was about getting the tap out of the way, by her suggestion, we decided to get a second opinion. I scheduled an appointment with yet another neurologist. It turned out he had gone through school with ‘Dr. Gong’, and felt she was the best and brightest in their class. He suggested we stick with her, but reassured me that my wife’s idea of getting a second opinion was a wise one, and that he would be happy to treat me if that’s the way I wanted to go. With his glowing review of ‘Gong’, I figured I’d just stick with her. Jen and I figured out when both of us would be able to have the time off, since I would not be able to drive after the operation, and would be rather immobile and tender for at least a day or two afterward. So, now the Spinal Tap was scheduled, and things were getting put into “Too much fucking perspective!” as David St.Hubbins put it. (Had to throw a couple of ‘Spinal Tap’ references in here. I had to get a spinal tap and I am a musician after all…..well, was a musician.)
Okay. I promise! We are close to diagnosis. We are getting into month four of the ‘You have MS, you don’t have MS.’ rollercoaster ride. Isn’t it a blast! (Sarcasm. Do I really need to tell you that anymore. I doubt it. I think you get me now.) I know it’s taking a while to get to diagnosis, but I think you can imagine what it was like in real time. You are just getting a fraction of the wait to find out what was wrong. It’s nerve racking. Pun intended.
Until next time, enjoy what you have in life. It’s probably better than what a lot of people have to deal with. I continually have to remind myself of that. See you next Tuesday!