Stop Horsing Around with MS

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Did anyone else catch the recent chat on Fox News about Ann Romney, and her Multiple Sclerosis?  Normally I would not watch Fox News, but we were staying with friends on a trip and they had their television tuned to Sunday  House Call.

 

Of course I paused to listen to this story because of the topic, and they   included a brief part of an interview they had done earlier in June with Ann Romney.  I know she has come under much criticism recently about her portrayal of MS, the resources available to her, and all the other baggage that comes with being a high profile public personality.  I have nothing to say about her personally, because that is a lesson  I learned very quickly with MS  – we are all so different but yet the same in living with this disease.  I hope her MS stays in remission forever, just like I wish well for every one out there  who lives with this MonSter,  and this blog is not about her.

 

What I do want to talk about is this glaring example of how little some medical experts know about MS and the way it is portrayed in the media.  Up first for this report was Dr. Marc Siegel, an internal medicine doctor and associate professor at New York University (NYU) Medical School.   He was also the person who did a lengthy sit-down interview with her in mid-June about her MS.

In his brief few minutes of air time, there were several points he made that had me screaming “no!!!!!.”  He talked about the disease modifying therapies available and said they all  have serious risks including Lemtrada,  which causes problems with platelets and that another MS drug causes encephalitis.    For the record, Lemtrada is not available to us even though the idea of a few IV treatments and then skipping it for a year is appealing; Lemtrada has only recently been delivered to the U.S. Federal Drug Administration and it’s European counterpoint  for approval.

 

Encephalitis from an MS drug?  I am guessing Dr. Siegel was referring to progressive multifocal leukoencephalitis that is a rare but documented problem with Tysabri. He threw the phrase out there in association with treatment that makes it sound like a regular problem, and I wish if he was going to throw these possible complications with treatment out there, he would take a moment to discuss the risk /benefit decision we all face.

 

It wasn’t enough that he was misleading and spreading fear about the drugs.  He then went on to talk about Ann Romney’s use of horseback riding for her therapy and talked about the  value of the LOVE between a horse and its rider.  He said nothing about the therapeutic value of RIDING a horse.  Hippotherapy is an approved therapy for many different disorders; for people with MS, the movement of riding a horse mimics the human walking motions and improves core stability.  The body responds to riding a horse with improved balance, stronger core muscles  and can even reduce spasticity.  Just like petting a dog will lower  blood pressure, there probably is a benefit to bonding with a horse, but the therapeutic value for people with MS is much more than  love.

 

 

The female anchor of the program did interject that “horses are magical” and maybe that’s my problem-  if I just believed more in magic and got a pony, my MS would disappear.

 

More than once, Dr. Siegel mentioned how Ann Romney has beat MS.  Wow, that’s an impressive statement because the last I checked, no one has beat MS-  we merely learn to live with it. He also credited her faith and being strong as the key to her beating MS.  I can’t help but wonder how that makes the many people with MS who I know who haven’t beat MS, despite being strong and faithful.

 

Perhaps the most confounding statement Dr. Siegel made was that often the best decision to make for patients is to not treat their MS, and that it is often better to wait because of the side effects of the MS drugs.  A louder scream comes from me on this one…… argh!!!  The most recent recommendations of the MS Consortium of Research Centers  (MSCRC) and the FDA approved guidelines for these drugs,  is to treat people with MS immediately with their first symptoms – clinically isolated syndrome (CIS) is recognized as the first sign that a person may later develop MS.  The earlier the treatment is begun, the better the odds that the disease progression can be slowed. If a person is beyond CIS and has MS, it would be unthinkable to not offer that patient a treatment option.

 

The second doctor to speak about Ann Romney’s MS, was David Samadi, MD, also from New York, who is the “Chief of Robotics and Minimally Invasive Surgery at Mount Sinai School of Medicine,” according to the Fox website.  I had hoped that this doctor would present solid information on MS, but at the time I did not know his credentials or I wouldn’t have held that hope.  MS is far removed from the black and white world of robotic medicine.

 

Dr. Samadi stated  that MS is diagnosed by the evidence of plaques showing on MRI’s and through the analysis of the cerebral spinal fluid (CSF)  from a lumbar puncture.  He completely ignores the documented fact that not all CSF will be positive and about 15% of people with MS have negative lumbar punctures.  The same is true for the MRI imaging – it is very much possible to have MS and not have visible lesions.  There are a number of factors that go into this, including low powered MRI’s, incorrect MRI software application, or radiologists misreading the MRI images.  There is growing evidence that MS lesions/plaques are not confined to the brain’s white matter and may be lurking in the gray matter as well. High powered MRI imaging is being used to see if perhaps this is where MS hides in the early stages.  He said nothing about the clinical neurological exam or the role the patient’s history plays in the diagnostic process.

 

He echoed Dr. Seigel’s view that Ann Romney is a strong woman and because of that and her faith, she has her MS in control and she should be a role model for the rest of us living with MS.  Unfortunately few of us have her resources so it is somewhat difficult to shadow her coping style.

 

As a final note, he proclaimed that since she only has Relapsing Remitting MS, she just has the mild type of MS and she will do well.  Can you hear me letting loose with a primal scream at the TV at this point?  Obviously he doesn’t know the statistics of how many people with RRMS will move on to secondary progressive MS (SPMS) and accumulating disability.

If you want to practice your very own screams at the screen, you can view the Fox News discussion at

http://video.foxnews.com/v/1714450639001/ann-romneys-battle-with-multiple-sclerosis/?playlist_id=930909755001

 

This is not the first and probably not the last time, where the talking heads on TV will get it wrong explaining Multiple Sclerosis.  Dr. Nancy Snyderman , the Today Show medical expert, usually makes me scream at the TV as well;  most recently she told viewers that men having MS is rare.  But what should we expect from a doctor trained in oncology or these other doctors who deal with robots and internal medicine rather than neurology?  They may be wonderful in their own fields, but they need to not present themselves as experts on a  topic that they haven’t mastered, and  judging from the false statements they make, maybe they even skipped the neurology rotation in med school

 

Would it be too much to ask  the networks to invite a real expert  to explain MS?  At least neurologists  understand that living with MS is more complex than having religious faith, just wishing it to go away, and loving a horse.

 

 

 

21 thoughts on “Stop Horsing Around with MS

  1. Wow, Laura, I hadn’t seen the interview. What rubbish. Why didn’t they get a couple of MS specialists for the interview? They aren’t exactly hiding under rocks. Now we have to do more damage control. Between this and “People” magazine’s cover on Jack and Sharon Osbourne, we’ve got our work cut out for us.

    • Laura

      I get the impression that all these doctors are on retainers, they do a quick look at some obsolete medical database for information and then pass themselves off as experts. You would think they could at least read wikipedia and get some facts. I take it you took the time to listen to the piece? thanks for commenting, I sometimes am concerned that it is just my interpretation.

  2. I’m just getting around to reading this, but you echo my thoughts precisely. Too many times I’ve seen this on TV, when a doctor — no matter what their field — will disseminate inaccurate information about MS. I’d say we should contact the network or program, but I’m convinced they’d never retract. I had hoped with Ann Romney that there might be some pressure for more research; unfortunately, I don’t think she has MS “bad enough” yet to want to pursue the “cure route.”
    Peace,
    Muff

    • Laura

      Muff, I don’t know how we find the happy medium and find the perfect MS patient. Who would be the ideal patient to spotlight since we are all so different? Like you, I had hoped there would be better accuracy in reporting with such a high profile person. Thanks for joining this conversation.

  3. Great post! This has been so very frustrating. Yes, Kim is right. We’ve got our work cut out for us. This damage control is going to be exhausting! Best, Christie

    • Laura

      Thanks for taking the time to read this and share your thoughts.
      I am afraid this will continue to be a frustration.

  4. I loved a horse once, figuring it would help with my MS. Instead, I was arrested for something call “bestiality” (sp) and so that ended my horse therapy…

    Faith in what may I ask? Some higher power that is “all seeing , all knowing” and makes some people wear funny underwear? NO, I am not talking about thongs! I wonder where these doctors graduated in standing among their fellow class mates? Maybe there is a rule in broadcasting that says only the bottom 10% of graduating doctors can be used for interview purposes…

    Dave

    • Laura

      Best with the Beasts, Dave? That poor pony….. Regardless of the network and its political and religious influences, I still believe the media has an obligation to get a story right. It appears we may be in the minority.

      • I agree Laura. The word “media” no longer refers to the news (as we knew it when we were younger). Media now can mean any blabbermouth with the money to put together a “media” outlet.

        Facts don’t mean a thing any more, but pseudoscience…that has the spot light and too many Americans are going for it. Rather than check out a story (which is so easy now with the availability of the internet) people would rather just believe what ever they hear or read.

        No wonder the United States has fallen so far behind in education when it comes to other countries. We used to be number 1!

        Dave

        • Laura

          I wrote on that topic – truthiness- a while back oon that topic. Saying it out loud seems to make it the truth for so many people.

  5. Great piece Laura , and as Kim and Dave have pointed out there is a great need for damage control and not from docs who practice “pseudoscience”. And onward we trod….

    • Laura

      What gets me the most is it seems to happen more and more but perhaps I am just more attuned these days. The quick sound bites happen on other disease processes and probably have this problem, too, but the MS errors seem to be very eggregious.

    • Laura

      I wondered how many people would follow my blog link. I’ve been dabbling on it for about a year – so see, I can be quiet. Thanks.

  6. i have been pretty upset about the “face of MS” that has been put out there by more than a few celebs. montel, clay walker, and now jack & ann…. what the heck man? and i want to know this… how did ann “beat” MS? is it a money thing? obviously she is privvy to some special treatment that the rest of us are being denied..

    i jest.

    it makes me mad. my family & friends (that i don’t see very often) will call me many times after these type interviews and make the obligatory comparisons…. horse-cocky! i get so sick of it.

    oh, i have a horse. and there is absolutely no way i would get on him at this point in the game. i love him, pet him and spend time with him…but never would i think of getting on him. heck, i fall out of chairs these days…

    • Laura

      Sherri, for some reason your comment landed in my spam a few days ago and I am just seeing it. I am in agreement – I want to see the real heros of the MS world and not the celebs. Besides, who says they want to be our spokespeople anyway? Thanks for stopping to comment.

  7. Wendy

    Great post, Laura! I screamed at a magazine in the grocery store with Sharon Osborne on the cover “fighting for her son’s life” as a result of MS…

    • Laura

      thanks for adding your thoughts, Wendy. Would it be better if MS got no media coverage at all than continuing to perpetuate these MythS? I have to wonder.Be sure to look at Jack Osbourne’s FB page – he is quite outspoken about the coverage, too.

  8. I came here from Carnival of MS… and now I won’t know how to return….
    That is, I got all riled up by your Mrs Mitt post, and I want to read more of your blog, but
    I can’t find a Follow Button, and I will never have the memory needed to come here again on my own.

    My ms support group spent most of a recent meeting on that interview, which I never saw, much the same way “we” were all caught up in Ozzy’s son.
    Aside from the inaccurate reporting, which is clearly the bigger picture, I am annoyed that celebrities get so much of our time and attention, at OUR meeting, on OUR blogs….
    Do we expect their celebrity to automatically help us?
    …………………………….. “Poof, Celebutard X said ‘MS,’ it was good?”

    YES, it did occur to me that I should be grateful to have any group, but ms hasn’t made me any good-er….

    PS, I saw in your Greetings page that you weren’t confidant about design issues, but don’t be!!! Your writing is what matters, and that is great.
    (I was an old hand at designing web pages, and now it is a curse that I find myself preoccupied with trying to make things “line up,” like they used to instead of keeping on my train of thought)

    Yak, yak — Follow Button?

    • Laura

      Thanks for taking the time to share…. As for a follow button, tell me how to do that and I will be happy to add one. LOL I thought I had one on my page but don’t see it. -Laura

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