Wednesday, August 10, 2016

A Visit to My MS Neurologist

If you have MS, your neurologist is probably your MS doctor. Poor bastard.

Meet My Doctor

I've had the same neurologist since before my diagnosis. Let’s call him Dr. M. It was only by the luck of the draw that I ended up seeing him 17 years ago when I had a little hitch in my step—more evidence of my charmed existence. Other than this annoying little chronic disease, good fortune has rained down on me over and over again.

For the first 8 to 10 years, Dr. M and I were hyperactive: trying one treatment after another, fighting with the insurance company for reimbursement of off-label drugs, and discussing potential treatments still in the development pipeline. He supported all of my Hail Marys in any way he could.

Ours has never been a relationship where I make an appointment with him to find out how I’m doing. I go there to tell him how I’m doing. Sure, he gives me a cursory exam now and then, and we’ve done a few MRIs over the years, but not so much lately. I have advanced primary progressive multiple sclerosis, and we both know there’s only so much that can be done for me.

To date, no treatments have ever been approved by the FDA for PPMS. Around the end of this year, however, we are expecting a drug called Ocrelizumab to be the first. Dr. M and I are cautiously pessimistic. I’ll probably give it a try, but there is evidence that it works best on people who are younger and less disabled than I am.

So what do we talk about once or twice a year when I visit my neurologist, like I did on Monday of this week? It’s about a 50-50 split between medical discussions and general bullshitting. General bullshitting consists of catching up on one another’s family life, complaining about getting old, complaining about the cost of raising children, and complaining about politics (we tend to have the same political slants, so that dominated this week’s visit).

What Should We Expect From Our Doctors?

I enjoy my appointments with Dr. M. I appreciate how he listens, how supportive he is, and how he gives such solid advice. Most of all, I appreciate how he doesn’t sugarcoat anything. That’s not what I need from my doctor.

Do you have a positive relationship with the most important doctors in your life? If not, maybe it’s time to consider a change.


  1. Yes I have similar doc visits twice a year. I tell them how I am doing, yes MRIs are new stuff I did not have back in the day. I am hopeful for you and the new drug but I understand your caution. I have had MS so long, I am out living my docs, kinda sad. Glad you have a good one,

    1. Kim, thanks for stopping by. Better to outlive your doctors than the opposite!

  2. I look forward to my appointments with my Neurologist -- I feel we have a very good rapport, and I like the fact that he's so much younger than me since I'll be seeing him for the rest of my life, and I don't have to worry about him retiring any time soon! He and the whole staff at the practice really go to bat for their patients and I never feel like I'm being rushed through my appointments. Sometimes it's hard to articulate what I may be feeling/experiencing at certain times, and they patiently try to help me figure out if it's ms-related, age-related, or something else. It also helps that he and the people that work with him are very upbeat and have a good sense of humor.

  3. Pups, good for you! It makes a huge difference to have everybody working together.