Is treating multiple sclerosis only about being treated with a medication? At least one neurologist thinks so, and probably more.
The other day, posting in an MS Facebook group, a woman named Debbie wrote about her first visit with a new neurologist: “He asked if I was on a DMD [disease-modifying therapy] and I told him not anymore. I’ve had bad experiences. He told me that he wouldn’t treat me unless I went on one. He was trying to force me to do something I was not comfortable with. It was basically his way or the highway. The highway sounded better so I hopped on it and went home.”
I don’t blame her, because who’s in charge here? This isn’t the first time I’ve read about a neurologist believing that being treated with a DMT is the only way to go. But, shouldn’t the patient have the final word?
Take it or leave me
This “my way or the highway” philosophy isn’t limited to medication decisions.
A recent study of physicians reported more than a few were reluctant to treat someone with a disability. Some physicians don’t pay as much attention to the health complaints of women, especially concerning pain. Some doctors may tell you “it’s all in your head.” It can also be difficult for older people with MS, like me, to receive newer, high-efficacy MS treatments. Who’s in charge here?
The other day, fellow MS News Today columnist Jenn Powell posed a question on Twitter asking how satisfied MS patients are with their relationship with their neurologist. One user responded, “It takes me 2 months to get an appt, Then he walks me up and down the hall, Checks reflex’s and asks if I want a new drug.” That’s it. Others regularly report it takes them six months to get an appointment with their neurologist. Who’s in charge here?
Even with my neurologist, whom I love and who has treated me for over 20 years, I need to book a few months ahead for a routine visit. But it’s worth the wait. When I have that appointment, she spends 45 minutes to an hour with me. We have a thorough conversation about what, if anything, has changed with my MS and whether there are any new medications that might help me. Then we go through the standard series of MS clinical tests. I’m in charge here, but many aren’t as fortunate.
If you’re not in charge is it time for a new neurologist?
If you’re running into some of these problems, it might be time to look for a new neurologist. But that’s easier said than done.
Aaron Boster, MD, who runs The Boster Center for Multiple Sclerosis in Columbus, Ohio, and is a member of what I consider to be the “enlightened” neurologists group when it comes to patient care, thinks you should consider a number of things before deciding to make a change.
First, decide whether you really need to do it. See if you and your neurologist can talk about your concerns and treatment expectations.
If you’re going to change, you need to be in charge of all of your records. This includes treatment notes, lab results, and MRI images — everything your current doctor has. Carry them by hand to the new doctor. If you’re being treated with a “chemo”-type MS medication, such as Ocrevus (ocrelizumab) or Lemtrada (alemtuzumab), it’s a special situation. Your current neurologist needs to speak with your new doctor, one on one, about your treatment before you move.
The problem is, if you think you need to switch your neurologist, that doctor might not be cooperative in any of those areas. Can’t the medical profession do better than this? Is this a problem of doctors simply not having enough time to treat patients as they should, or is it something else? What can a patient who is stuck in the “my way or the highway” hole do to dig out of it?
We need to find better ways to be sure we’re in charge of our MS treatments.
By the way, have you checked out my book “The Multiple Sclerosis Toolbox?” It has some hints about being in charge of your MS treatment.
(A version of this post first appeared as my column on the MS News Today website.)
(Featured image by Gerd Altmann from Pixabay)
