My way or the highway, some multiple sclerosis neurologists think

Such demands might move you to change doctors. And what then?

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by Ed Tobias |

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Note: This column has been updated Feb. 15, 2023, to correct that Ocrevus is an infusion medication and is not similar to chemotherapy.

Is treating multiple sclerosis (MS) really all about the medications? At least one neurologist thinks so, probably more, and I think that’s no way to practice medicine.

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, but what’s going on 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.

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Take it or leave me

The “my way or the highway” philosophy isn’t limited to medication decisions.

I’ve written about a study of physicians that 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. And 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.

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 [appointment], then he walks me up and down the hall, checks [reflexes] 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.

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. Many aren’t as fortunate.

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 an infusion MS medication, such as Ocrevus (ocrelizumab) or Lemtrada (alemtuzumab), it’s a special situation because these are powerful immune system suppressants. 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?

You’re invited to post your thoughts and ideas below and to visit my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Barbara avatar

Barbara

My neurologist stopped Ocrevus, due to reaction during 2nd appointment. Then my neurologist left the practice.now I have a appointment with a PA. I had to waitt 2 moths for that appointment as my new neurologist was booked.
I have PPMS AND I AM 66 y.o.
Frustrating. I have a list of things I’ve gleaned from MS NEWSLETTERS. Padma 28, Botox, GFAP,alpha lipoid acid supplement,,etc
Frustrating

Reply
Ed Tobias avatar

Ed Tobias

Hi Barbara,

I understand your frustration. I've feel very, very fortunate that I've had the same, wonderful neuro for over 20 years.

Ed

Reply
juan carlos benito avatar

juan carlos benito

Please give me that
Dr's name, I'm at the end of my rope with these stuck up neuros!

Reply
Ed Tobias avatar

Ed Tobias

Sorry, Dr. B, I don't know the name of the doctor. He was mentioned in a Facebook post but he wasn't identified.

Ed

Reply

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