New Kids on the Block

There is a new Multiple Sclerosis site online that just went live today, March 6.  I am happy to tell you that I am proud to be associated with MultipleSclerosis.net and will be one of their featured bloggers.  I am in great company with a talented cohort of people with MS and also a caregiver, and we will be offering a wide variety of views and experiences.

I hope you will check out this new site, and especially my first blog for them at:

http://multiplesclerosis.net/blog/its-our-turn/

Wishing you well,

Laura

 

Stop Horsing Around with MS

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.

 

 

 

Welcome to the Club, Jack Osbourne

 

You may be used to a different type of club than this, but your recent diagnosis of Multiple Sclerosis lands you membership into a club where everyone is welcome but no one really wants to join. There is no bouncer at the door denying entrance because we aren’t pretty enough, or rich enough, or even smart enough.  In fact, the membership requirements to join this club still remain a mystery and none of us are quite sure why we have been included.

 

Your head must be spinning with this news and the attention being given to you in the media.  Sure, you are used to being in headlines, thanks to Ozzy and Sharon’s  fun-to-follow adventures, but this is a different news story.  You have chosen to speak publicly about your Multiple Sclerosis, what it means to you, and must be overwhelmed with requests for interviews.  Your voicemail box must be full of messages from well -meaning friends and family, all offering to do whatever they can to help you.  Thanks for putting a face to this disease and acknowledging your illness, we can only hope you’re your notoriety will bring more awareness to what MS really is.

 

Undoubtedly along the way, you will get advice from well-intentioned folks on the best way to treat your MS – expect to hear everything from bee sting therapy, special diets and brain stenting.  You are a smart man, and I hope you can ignore the distractions for now and focus on educating yourself.  Don’t believe everything you hear or read – some false statements about MS and your case in particular, are circulating.  For example, being a male with MS is not all that rare; rare would be a man having breast cancer.  You are special, Jack, but your having MS is not.

 

I heard a television doctor talk about the mind-body connection with MS and it was made to sound like with the right resources, you can control your MS.  If only that were the simple truth, but it’s not.  Multiple Sclerosis is serendipitous – put a 1,000 of us with MS in a room together and you will find 1,000 different variations and degrees of the disease.  Almost all of us at one time or another have felt the reproach of someone else that if we just try harder we wouldn’t feel so bad.  No one knows except those of us with MS what it feels like to have the central nervous system misfiring and the extra effort it often takes to do the most ordinary of tasks. And just wait until you hear others tell you over and over that you look so good –  how could you possibly have something so toxic as Multiple Sclerosis?  They mean well, but ………

 

We encourage everyone new to the club to shut out the outside noise, spend some time learning what you can about this MySterious disease,  and finding a way to live comfortably with the knowledge that you have a chronic disease.  One of the best things you can do for yourself is find an MS community that you are secure with, and address your questions and fears to the people who can answer them best – those of us who also live with MS. The good thing about online communities is you can join anonymously, and you can be whomever you want and not disclose your true identity.  You will find the MS community has a large heart and is open to everyone. Let me know if you want the names of a few good choices.

 

It is not just hype that now is the best time to have MS – there are so many treatment options available and if one drug doesn’t work to slow the progression, you can always try the next one.  Put aside that image of all people with MS end up in a wheelchair, because it just ain’t so anymore.  Take advantage of all the resources you have, and get the best doctors, massage therapists, acupuncturists, and yoga instructors to help keep your body in-tune to its immediate needs and try to live in the moment, rather than worrying about the future.

 

From what I read, both your mother and father are looking for the answers as to why you have MS.  That’s a common theme with parents everywhere- I know my mom also takes responsibility for my disease.  There is no connection between our parents and our MS, but it will be hard to convince them of that fact.  Instead, be sure to let your Mom know when you need her help or pick up the phone and just talk to your Dad.  Share your worries, but also continue to share your joys and successes.  As a new Dad, you already understand how deep that love flows.

 

There is no secret handshake for this club, no membership card to fold neatly into your wallet, or even an oath to take; there is  a membership  of over 400,000 Americans and 100,000+ people in the U.K. who live with MS.  Most of us continue to live quite well, and I hope you will, too. Welcome to the club, Jack – we’re here for you when and if the time comes that you want to activate your life-time membership.

wishing you well.

 

MS and Truthiness

Today’s  blog assignment is to select a quote – either positive or negative –  and share my thoughts.  Rather than a quote, I want to talk about a particular word that keeps coming back to me and how it relates to Multiple Sclerosis.

That word, TRUTHINESS, was introduced by political humorist Stephen Colbert on his very first show,  and is meant to bring to light how facts are not necessary to make something true, merely wishing it to be the truth is enough to make it so.  The word quickly became even more significant than its use on the Colbert Report when it was selected by the linguists of the American Dialect Society as its word of the year for 2005. They define truthiness as “”the quality of preferring concepts or facts one wishes to be true, rather than concepts or facts known to be true.”

You can learn more about truthiness by watching Colbert explain it at

http://www.colbertnation.com/the-colbert-report-videos/24039/october-17-2005/the-word—truthiness

 

Then in 2006, Merriam-Webster Dictionary pronounced truthiness as their word of the year for 2006, and expanded the definition :

“Merriam-Webster’s #1 Word of the Year for 2006:

1. truthiness (noun)

1 : “truth that comes from the gut, not books” (Stephen Colbert, Comedy Central’s “The Colbert Report,” October 2005)

2 : “the quality of preferring concepts or facts one wishes to be true, rather than concepts or facts known to be true” (American Dialect Society, January 2006)”

(http://www.merriam-webster.com/info/06words.htm)

 

This  selection by Merriam-Webster makes truthiness a word that will remain a part of our language  forever.

What TRUTHINESS do we experience in our virtual worlds about our particular disorder?  For the Multiple Sclerosis community there is a whole lot of truthiness going around these days, but it’s nothing new.  There is always some procedure or treatment reported, without scientific proof, that people embrace and promote as THE cure for MS.  We’re a group that will try just about anything to make us better.

Bee sting therapy has been around for years, promoted as a way to engage our immune system to stop the attack on our myelin.  It was promoted so much that scientists took the time to test the theory and are unable to duplicate it in the labs, but there are proponents who continue to swear to the truthiness of the efficacy of  being stung repeatedly by bees.   Never mind that many of these people also are beekeepers and/or have books to sell on how to perform the therapy. I have a beekeeper acquaintance who recently approached me about this very idea.  Thanks, but no thanks.  I’ll side with the facts on this one.

There are many people who swear by a special diet to cure Multiple Sclerosis. There is a vegetarian/vegan diet that was promoted several decades ago, and then extensively studied by scientists who found no proof that any special diet works for a cure.  A current diet in vogue to finally  be THE cure for MS is the hunter/gatherer diet, which swears the answer lies in a diet rich in protein and vegetables, all of which must be organic and free of additives.  Stories of people curing their MS through these diets are all over the web,  and there is an abundance of people who swear of the truthiness that these diets  work.

In the past few years, there has been a groundswell of support for CCSVI as the cause of Multiple Sclerosis.  This idea says that MS is caused by an insufficiency of blood flow in our jugular veins and brain.  Diagnosis and treatment of CCSVI is currently being studied and millions of research dollars have been diverted from other places to study CCSVI because there is a large contingent of MSers who swear in CCSVI’s truthiness.  In the meantime, if I have the money to buy into this truthiness I can have this procedure done in Costa Rica, China or Bulgaria.  Just by writing about this, I am fairly sure someone who embraces  this concept will come through and want to debate the truthiness of CCSVI.

Another truthiness about MS that  is widely spread on the web and you might not know is the pharmaceutical companies and our doctors don’t want to find a cure for MS because they wouldn’t be able to make money off of us and our expensive treatments.  Unproven claims are made they won’t want to look at other neurological disease that are also in need for therapies and cures.  They would much rather keep all of us down and out.  I trust if you have read this far, you understand that with truthiness on our side, we need no facts to make these  claims, right?

Don’t get me wrong, I am all about finding a cure for this MiSerable disease and believe that gut instinct plays into the picture somehow.  It’s just that I want the science to back up the instincts.  For the record, I am not always against truthiness, and I would definitely embrace any wishful thinking without scientific proof if someone wants to tell me that ice cream is THE cure for my MS.

Wishing you well.