Why Can’t Some MS Docs Communicate with Their Patients?

Ed Tobias avatar

by Ed Tobias |

Share this article:

Share article via email
earlier symptoms


Browsing through some multiple sclerosis Facebook groups the other day I was reminded of the line from the 1967 movie Cool Hand Luke: “What we have here is a failure to communicate.”

These posts jumped out at me:

So when my neuro says he wants me to start physical therapy, does that mean I’m going to hear a call from them or does that mean I’m supposed to go out and find my own? Just asking cause it was a week or so ago when he said this. Confused.


My son starts (Lemtrada) infusions Monday. Can you guys give me an idea of what we’ll need to take with him to the infusion center? And what we’ll need to have ready at the hotel? Feeling anxious.


I go for five days of (Lemtrada) infusions next week I’m terrified… Can someone help me with what to expect or if I need to prep or anything of that sort? Thank you.

What’s the problem?

How can it be that patients are left dangling in the wind like this? Why is it so hard for some of our doctors to communicate with us? Or is it, in fact, the “us” that’s having a hard time communicating with our doctors?

I just can’t fathom the question about physical therapy. How can any doctor suggest that a patient begin PT, but not provide a referral? (And, where it’s required, write a prescription) This isn’t something that should be left to a patient to figure out.

Regarding Lemtrada, I regularly see complaints from patients about a lack of information in advance of their first series of infusions. It seems that many neurologists are unfamiliar with Lemtrada protocols and leave it up to the infusion center to brief the patient. Yet, it also seems that not all infusion centers are knowledgable about Lemtrada. Lemtrada is a complicated drug, and its protocol requires patients to obtain and take several other drugs before, during and following the infusions.

The drug’s manufacturer, Genzyme, provides a “One to One” support program for patients but, from my personal experience, it seems a bit overwhelmed. For example, my pre-infusion information “kit” didn’t arrive until a week after my infusions had ended. Fortunately, my own neurologist was great about providing information before, during and after my treatment.

It’s a two-way street

But, here’s something important. Information flow is not just the doctor’s responsibility. We, as patients, have a responsibility to ourselves to get the information we need. And that means being proactive about it and ready with questions before setting foot in the doctor’s office. The Agency for Health Research and Quality (the lead U.S. federal agency charged with improving the safety and quality of America’s healthcare system) has an excellent game-plan on its website to help you get the most from a visit with your doctor. It’s worth a look before your next appointment.

The American Cancer Society has an excellent guide about how patients can share the responsibility for good communications with their doctors. Though it’s focused on cancer patients, just substitute “multiple sclerosis” for “cancer” and almost all of its information is appropriate for us. It also is the only resource I’ve found that provides suggestions for how to raise the communications issue with a doctor who doesn’t communicate well. For example:

  • “I’m worried that we aren’t communicating well, and here’s why …”
  • “I need to be able to talk with you about _________, and I feel like I can’t. Can we discuss this?”
  • “I realize that you’re very busy, but I need to discuss _________ with you. Can we schedule a time to do that?”
  • “I’m having trouble understanding ___________. Can you help me?”

The bottom line is, don’t be shy. Be prepared. You’re your own best patient advocate.


[You’re invited to read more columns on my personal blog: 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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


mary avatar


Thank you for this article. I have a little situation that I frequently run into at the doctor visits, At the end I am presented with the treatment plan and then they are in a hurry to end the visit before I have a chance to ask anything. I tried to engage in a review of what was said and I am told that they have other patients time is up.

Ed Tobias avatar

Ed Tobias

Hi Mary,

You may not have a choice of doctors, but if a doctor told me that he or she didn't have time to answer questions about my treatment plan I'd be looking for a new doc.

Here's one suggestion. At the START of your appointment asks the doc to please set aside a couple of minutes to answer any questions you have about the treatment plan. See what happens.

You could also send me his or her email address and I can send him a link to this article.


Meredith avatar


I guess I'm lucky. I only see my neurologist once a year but my last appointment was 45 minutes long, and I have the opportunity to communicate with his PA any time I need online and I always get a response.

Ed Tobias avatar

Ed Tobias

Me, too.

I see mine twice a year and the appointment lasts 45 minutes to an hour, much of that time spent talking about how I've been and where I'm heading. She is also available via e-mail and responds very quickly.

However, I think we're the exceptions. Most folks seem to be getting a much lower level of care.


Mary Holmstrand avatar

Mary Holmstrand

This statement jumped out at me: "The American Cancer Society has an excellent guide about how patients can share the responsibility for good communications with their doctors. Though it’s focused on cancer patients, just substitute “multiple sclerosis” for “cancer” and almost all of its information is appropriate for us". We all feel as if we have cancer!!! "A disease in which cells divide uncontrollably and destroy body tissue"....just because MS does not present as a "tumor or space occupying mass", it is still destroying body tissue. Yet, we cant get first line treatments like "cancer patients" whose providers seek to "cure" them vs. the MS provider approach to "plug the dyke" and hope for the best. My personal opinion is the neuro community is responsible for this approach (and lack of communication) and we as MS pts are not angry enough with that accepted approach! Except me!


Leave a comment

Fill in the required fields to post. Your email address will not be published.