MS Relapses May Be Significantly Under-Reported. Duh.

MS Relapses May Be Significantly Under-Reported. Duh.
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MS_Wire_Ed_Tobias
This comes as no surprise to me and probably not to you.

MS patients may not always contact their healthcare providers when they’re having a relapse. This information comes via a pair of surveys that were released at the recent ECTRIMS-ACTRIMS conference in Paris.

In the first, Health Union questioned 5,311 patients in the U.S. According to the report:

  • 46.9% of respondents with relapses said they always or often contact their HCP during a relapse; 45.8% said they sometimes or rarely contact their HCP during a relapse; and 7.3% said they never contact their HCP during a relapse.
  • Common reasons for patients not engaging their HCP during a relapse were: relapse is not severe enough (57.9%); HCP is unhelpful or didn’t tell me I should (30.9%); medications are ineffective or not well-tolerated (25.6%); preference to manage alone (24.4%); financial or insurance barriers (16.1%); or had medication on-hand (10.0%).

In the second, the Harris Poll surveyed 250 adults who had a relapse within the past three years. It reported:

  • While most patients (91%) believe it is at least as important (if not more important) to treat relapses as their MS, half (51%) said they do not always contact their physician when they suspect they are experiencing a relapse.
    • A majority of those who do not always report their suspected relapses cited their reason for not doing so as believing the relapse would resolve on its own and didn’t need to be treated (67%).
  • Patients who always reported suspected relapses:
    • strongly agree that their doctor has spent time educating them about the signs and symptoms that could indicate a relapse (54% vs. 24%).
    • state that it is very important to monitor for signs and symptoms of a relapse (83% vs. 51%), report symptoms regardless of severity (83% vs. 51%), and seek treatment for their relapse (80% vs. 48%).

Both of these surveys were sponsored by the company Mallinckrodt Pharmaceuticals.

Here’s why I’m not surprised

In September, I wrote about how too many MS patients seem uncertain about what constitutes a relapse, and whether what’s happening is severe enough to warrant a call to their neurologist. Go to nearly any MS Facebook group and you’ll see patients asking other patients what they should do about a symptom and whether they should call their neurologist, or even go to the emergency room.

A few examples:

“Ok i am pretty new to all of this with only being diagnosed in april. (Written in May). When do you know you are having a relapse and when to go to the hospital?”

“Quick question: Can you have MS symptoms without having a relapse or a flare (if that is the right term)???”

“Just a quick question guys. I’m in a relapse, my legs and arms are weak and my balance is rubbish..should I exercise..even a little.. or rest up ?”

“Is a relapse for most of you a distinct event?”

Here’s why I think this is happening

What we have here is a failure to communicate. Forget about the word “relapse.” Either neurologists aren’t being clear with their patients about what events should trigger a call and when they can wait, or, the patients aren’t listening. Or both.

Some patients are also discouraged from calling because it may take over a day to get a response, and that response may come from a nurse or a receptionist who is unable, or unwilling, to help.

“When I called my neuro at xxxx he’s not available until June. I was basically told drink water, eat right & exercise.”
“My coworkers saw how I was struggling to walk. I had to have coworkers help me walk. The nurse said the neuro said there is no need to miss work just push thru!! WTF”

The Health Union survey, in particular, seems to confirm my suspicions.

What’s needed

Back in February, I wrote about how doctor-patient communication needs to be a two-way street.

“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.”

But healthcare providers also have to do their part, and I think too many are shirking this responsibility. Are any of you out there who would like to weigh in?

You’re invited to follow my personal blog at www.themswire.com.

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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.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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3 comments

  1. Stephanie says:

    After reading the above comment n the article that stated the neurologist “not available until June”, I will say that I sympathize with that. Good luck these days finding a doctor of any type that you don’t have to make an appointment with for months in advance. I do know, however, that my neurologist will fit in patients who have an issue that requires immediate attention. For relapses, though, he will start with a phone call and then he may go ahead and prescribe for steroid infusions or whatever. I don’t call any more, because steroids basically do not work for me and I have too many adverse side effects, so I avoid them if at all possible. To me, that is a problem. There is not much to be done for relapses other than steroids, so it just isn’t worth the hassle.

  2. Stephanie Redden says:

    I’m very glad if I call my neuro they call back pretty quick. I don’t bother calling with little things because I feel I would calling at least weekly.

  3. SHARON CANNON says:

    No one has ever told me as far as I can remember, in my 40 plus years of dealing with this disease, the difference between a flare up, an exasperation or relapse, except for the time frame. Lasts longer than a few hours, flare up, a day exasperation, longer relapse. Well the only way you can tell is time and by the time you figure it out you could be in real trouble! Conversations must change along with the patients needs and the new innovations, medications, etc. Why aren’t these Drs. more experts at this than just taking a few courses and thinking they can handle any MS Patient, when no two are alike. It’s really frustrating for the patient and Dr both. New Guidelines and information must be shared with both Dr and Patient alike to help further our way towards a cure~ Please remember your patients depend on you to help them explain what is happening to their bodies, they don’t even know what could be an issue for MS or some other illness. Knowledge is power, put the power into your patients hands and you maybe surprised what you may learn~

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