Two Different Approaches to Providing Online MS Help

Two Different Approaches to Providing Online MS Help

I received an email recently from the National Multiple Sclerosis Society in the U.S. promoting a searchable database of “credible doctors and resources.”

A few days later, I happened to run across another online multiple sclerosis (MS) information service hosted by the HealthCare Journey website. They call it a Virtual Multiple Sclerosis Center. It’s designed to provide an answer from a healthcare professional to nearly any question you have about multiple sclerosis.

Both efforts attempt to provide clickable, useful information for people with MS. But I think only one of these is really useful: That’s the virtual center.

The Virtual MS Center

This website tool involves about 20 healthcare professionals, all of whom are MS specialists, including neurologists, physical therapists, and nurses. There’s even a dietician. This resource has been around since 2016, but I’m just catching up with it. Patient columnist Laura Kolaczkowski wrote about it two years ago.

In her column, Laura wrote, “The appropriate MS expert will respond to your posted question, and everyone can benefit from reading this section. Even if you have your own neurologist, this is like having an additional medical expert to consult.”

All of the questions and answers are posted for everyone to see. And the service is free.

Here’s an example of one question and answer from about a month ago:

Question:
“I have been on Aubagio for almost two years. Is it OK to have the Shingrix vaccine? Everyone tells me it is an inactive vaccine. Thanks.”

Answer:
“Yes, it is true that Shingrix is not a live viral vaccine. Use of Shingrix while on a DMT (ie, aubagio) may be blunted due to the MS therapy. Per CDC, if you are negative for the chicken pox virus antibody (meaning you do not have immunity against the chickenpox virus), you should not get this vaccine. Your neurologist can test for this by sending for a VZV IgG antibody titer (blood test). If you are younger than 40, there is a chance that you are negative for the chicken pox antibody (those over than 40, and before the vaccine era for VZV, are likely to have memory immunity for chicken pox and could get the Shingrix vaccine). Before you pursue this vaccine, please discuss with your MS provider as there may be other considerations for this vaccine in your specific case.

A. Scott Nielsen, MD MMSc
Neurologist and MS Specialist at Kaiser Permanente.”

Other questions that were answered over the past two months include:

  • “Can I switch back to Tysabri from Ocrevus?”
  • “Will a disease modifying therapy help me?”
  • “Is it normal to feel like you’re going through the five stages of grief after a diagnosis of RRMS?”

I was impressed with the quality of the answers.

The doctors and resources database

This is an effort by the National MS Society to help people with MS locate services near where they live. The eight categories of services are healthcare providers, emotional support, legal resources, financial assistance, mobility and accessibility, home care and housing, independent living, and medical and assistive equipment. Select a category from a pull-down menu and then a subcategory, a ZIP code, and a preferred distance. You’ll then be provided with a list of sources. (Note: this database covers the U.S. only.)

But it’s just a bunch of lists. There’s no verification of the quality of the service provider. Many of these services can be discovered using a simple Google search.

For example, searching for mobility and then transportation brings up over 50 listings. Most are standard taxicab companies. One listing is the emergency medical services number for my county. Another is “Scenic Tours and Water Taxi,” and one is listed as “Where U Johns Wantta Go.” I don’t think I want to know what kind of service it provides.

I came away with the impression that this database was compiled by an automated system based on keywords. It’s a nice try, but I was very disappointed.

Take a look at both sites and see what you think.

You’re also invited to visit my personal blog: 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.

2 comments

  1. Midge says:

    Wow! Where has this website been in my life with MS?! I am blown away by the quality of answers to a multitude of questions on the Virtual Multiple Sclerosis Center website. Thank you, Ed Tobias, for sharing this resource.

    I am grateful to the National MS Society for all that they do for all of us that have MS. Their sense of community and fundraising efforts have truly helped change the landscape for MS research and collaboration among MS specialists. But they cannot do it all, not since the newly released data has emerged that there are closer to a million people with MS, rather than the 400,000 number that has been used for years.

    Having other factual websites to research are so valuable to those of us that have quirky, but urgent (to us), questions. On the Virtual MS Center website I found information regarding the Shingrix vaccine that was very valuable and informative. Sometimes I have so many questions that I will forget what is most important, but this was timely AND important to me. Right now!

    • Ed Tobias says:

      Hi Midge,

      I’m glad that my column popped up at the right time for you. BTW, my wife and I have had the shingles vaccine several years ago but we want to also get Shingrix. It’s so popular, however, that it can be difficult to find it. And, since it requires two shots, six months apart, we need to find a source that can ensure they’ll continue to have a supply when we need the second vaccination.

      Ed

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