Looking for Dr. Right (Cause the difference between a good doctor and the right doctor is huge.)

Imagine you and your roommates are desperate for a bite to eat, and at long last some carts roll in. Everyone gets a covered dish, all but you — before you can even ask, somebody says, “Oh no, that’s not for you. Wait until the next round of carts.” The dishes are uncovered, and there’s some grousing but everyone chows down, right in front of you. Then another round of carts shows up and the roommates get a choice to change over to those meals. All but you again, because “Oh no, that’s not for you either. Wait until the next round.” On and on this goes, for years.

Let’s hear it from the other primary progressive MSers with plate-envy. Most cases of MS are diagnosed as remitting-relapsing, with distinct attacks of symptoms, and for whatever reason, most of the medicines treat that variant. In comparison, those with primary progressive have gone with empty plates until recent years and a treatment approved for PPMS, Ocrevus — but I’ll get to that later.

Johnny, tell him about our exciting parting gifts.

Over my decades with MS, I’ve been on a couple of disease-modifying treatments, with little results. As my condition progressed, my treatment screeched to a standstill. Though my chief neurologist in those years was a leader in the field, I received little medical support or encouragement, other than the occasional round of physical therapy I requested. Pretty much all of the treatments that came out after Betaseron did in 1993 were named “Oh no, that’s not for you.” That’s all I was hearing, so that became the attitude that seeped in and I settled into a kind of long-term funk. If my expectations were low, my morale and self-esteem were probably even lower.

Then a crazy thing happened on Reddit, of all places. There was a new treatment out, Ocrevus, and someone had found a doctor across town who was one of the drug’s researchers. The Redditer was eager to try the treatment because she felt kicked around by the disease and the medical establishment since her diagnosis eight years ago. Welp, eight years? What about 25 years, which was how long I’d been struggling? Frankly I was getting sick and tired of hearing people complaining about MS — which of course they’re going to complain because they’re frightened and frustrated — but for that one moment I’m thinking, ‘My case is so much worse than almost every case I’ve encountered.’ And here I was, getting passed up yet again, this time by someone who has had the diagnosis less than half as long as me. What about me? What am I to the medical establishment?

I was fed up and tired of eating from everybody else’s dog dish. From the info online, I found a research nurse who worked with this doctor and I contacted her, hoping she wouldn’t hang up on me. No, instead she helped me schedule with her doctor! The clouds parted and the angels sang and my jaw dropped to the floor so hard I had to winch it back into place. I floated around for the rest of the day, singing and whistling with the bluebirds like I was Snow White or something (but sounding more like Dopey).

Bringing it.

I went to the appointment to ask for Ocrevus, which was being promoted for PPMS, and the answer I got was “Oh no, that’s not for you”: It turned out that Ocrevus carried a risk of respiratory infection that I’m ill-prepared to fight off. So why was I so happy, ready to hang out with muh bluebirds when I left the office?

The difference was that the new doctor and nurse had a plan, an entire anti-MS battle map. This was an appointment that changed my life forever. My MS would not get treated directly, but there was a cascade of MS side effects that we would be taking on, with a whole team of medical pros. A new rehab doctor would be managing the great amount of spasticity/muscle tone causing me stiffness and fatigue, and hardship (even hazards) for my wife as my caregiver. A new pain surgeon would be giving me a baclofen pump implant to address spasticity more effectively than any oral tablets could. A new urologist would give me a suprapubic catheter, to manage ever trickier bladder issues. A new physiatrist would eventually give me Botox injections to better control my muscles and fatigue. New physical and occupational therapists would be there to help me learn these new ropes.

It was a lot of appointments, for sure, but as long as my insurance held steady, I didn’t feel put out or overwhelmed. Rather, I was energized: I went from nothing-going-on, to a whole bunch of stuff going on, for my wife and me both. Each of my new team was in touch with the others, so I felt supported like never before. This was the opposite of “that’s not for you.” There were tangible improvements happening in our lives.

My new rehab doctor, whom I hadn’t even met, told me over the speakerphone, “We’re going to give you a new body.” My wife beside me had tears running down her face. Something was happening — for me, for us — at last. We had a medical team to consult with, who had our backs and listened. Seriously it felt like the doctor and nurse possessed a golden key that unlocked the great puzzle that was my world.

Since then, I’ve added and made changes to my team. This felt like such an awakening in my life, like I had come back from the dead. Starting here, I gained a lot of momentum in life. The only other thing that compares is finding my friend Dave Perez and the Skydiving for MS event he offered in my area. Both moments felt like I was shaking off a lot of rust and getting off to a running start again in life. Life can pass you by quick, so be careful of remaining still for too long.

You best heed, whippersnapper.

Finding my health care team and improving on it over the years was a godsend. It’s something I recommend to everyone. Usually it’s difficult to find those doctors who take time with you and listen and function as collaborators and team partners, but once you find them you’ll see how worthwhile it is.

Mark Twain said “the difference between the almost-right word and the right word is … the difference between the lightning bug and the lightning.” Here’s wishing you lightning and inspiration in your upcoming appointments: I want you to hear, “Oh yes, I’ve got ideas for you.” There is a huge difference between a good doctor and the right doctor, just like there’s a huge difference between “oh no, that’s not for you” and an appointment that will change your life.