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Topics of Interest?

The Consortium for Multiple Sclerosis Centers’ annual meeting will be in Washington the first week of June and I’m excited to attend and will be reporting back to my readers here on MultipleSclerosis.net about stories of interest to me and hopefully for you. This is four days that are full of education opportunities for people in the medical field who care for people with MS; the attendees include neurologists, radiologists, nurses, therapists, nutritionists and psychologists among others. It is an extensive field of people who make up the MS team. In advance of the meeting they send emails with previews of some of the key sessions and talks to generate interest. Today’s email had a preview of a session I definitely plan to attend. The notice reads that we are invited to —-

“hear from a peer-led panel discussion about:

  • Potential patient barriers if initiating or resuming treatment for their relapsing MS
  • Best practice considerations if engaging untreated MS patients in treatment conversations

In the United States, recent research suggests there may be upwards of 40% of diagnosed MS patients that are not currently on a disease modifying therapy (DMT). Of those patients, 65% visited a neurologist in the past year and 80% visited a neurologist in the last three years.”1

This is a topic that has always intrigued me – why is it that some people choose not to take a disease modifying therapy drug even though they have been proven effective in delaying and even preventing disability from MS. I work at being respectful of each individual’s choice – even though I take a DMT and believe strongly in its benefits. On the flip side I also know many people who have made the choice to take nothing. It should be their decision to take no drug, but it should prove interesting to hear the medical provider side of this discussion. I can only begin to imagine the sense of frustration from neurologists when they encounter people who choose to take no DMT even though it is the medically recommended treatment.

I have met people who have parted ways with their neurologists over this DMT discussion, and a few even were ‘fired’ as patients by their doctors because they refused a DMT. The doctors basically said if the patient didn’t want to be treated their way, they would not treat them at all. I can’t imagine I will hear anything quite that harsh in this session, but the presentation on how to treat untreated patients should prove of interest, so watch for that update.

This annual meeting is the largest gathering in the US of MS treatment specialists, over 2,000 people come together solely for the education component. There usually aren’t any grand announcements of new discoveries – those are held for other conferences that focus on MS research. This is an opportunity to learn from each other on the best practices in MS treatment.

It will be full days, from before sunrise to well after sunset, with lots of learning and discussions taking place. I know my body will take a beating and my brain will be on overdrive or meltdown, and I will be pushing through the fatigue with the help of Provigil, but at the end of the conference I will have learned so much more about the treatment of MS in daily practice.

You can review the conference agenda in advance with me, and if you find something of interest you would like covered here please drop me a message and I’ll do my best to find out more for you.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Source: Truven MS Market Claims Analysis, July 2015.

Comments

  • @masbrautigam
    3 years ago

    Neurologist won’t give me a DMT as I am classed as inactive although I have many symptoms and struggle .I have been put down the list in any country because I am classed as inactive.My first official attack was January 2012. in Monaco they believe in treating the symptom and in Holland I cannot even get in.Australia is a long waiting list.Do I am curious to those that are classed as inactive.Do we need a DMT???

  • Laura Kolaczkowski author
    3 years ago

    Hi Mascha, I am not sure what they would mean by inactive MS because officially there is no such thing as INACTIVE. They know MS is always doing something to our bodies even if it isn’t obvious at first. Treating symptoms is ok but that is so different than treating the disease. It sounds like you know that about DMTs. The overwhelming answer to your question is YES, you should be offered a DMT if you want one. I’m so sorry you are caught in this struggle because you have enough to deal with in your MS – fighting with doctors should not happen. Can you go to a different neurologist and get the inactive removed from your record? Good luck, Laura

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