Will Ocrelizumab Hit a High Note?


Many of you reading this will already know that as of now there is no approved disease modifying treatment for primary progressive multiple sclerosis  (PPMS), only ways to treat the symptoms.  In fact there has been little talk about even doing studies for PPMS treatments that might slow disability progression.  If the headlines are correct, it appears that is about to change and I am excited for everyone with PPMS  to have an official option looming in the not so distant future.

Ocrelizuimab is the drug’s name and the results of phase III clinical trials performed on behalf of the manufacturer Roche/Genentech,  will be reviewed this week at ECTRIMS, the annual meeting of neurology specialists, researchers, therapists, nurses and pharmaceutical companies.  ECTRIMS is short for the European Committee for the Treatment and Research in Multiple Sclerosis, and this year’s meeting is in Barcelona, Spain.  ECTRIMS is the place where researchers share their BIG news – it puts their discussions center stage in the MS world and the press coverage will be extensive.

The advance notices on the presentation Efficacy and safety of ocrelizumab in primary progressive multiple sclerosis- results of the placebo-controlled, double-blind, Phase III ORATORIO study, lead everyone to believe there will be good news from the results. If the results weren’t so great, you can bet the manufacturer would not be putting out their press releases such as Genentech’s Ocrelizumab First Investigational Medicine to Show Efficacy in People with Primary Progressive Multiple Sclerosis in Large Phase III Study

The announement in the ECTRIMS Program book is less bold –







Incidentally, there will also be the presentation on Friday, covering the use of ocrelizumab in relapsing remitting MS  through the study results of the placebo-controlled,  double-blinded  OPERA I and OPERA II trials.










I have never claimed to understand all the science involved, but if I have this right, ocrelizumab is a not so distant relative of rituximab, a drug currently approved for treatment of rheumatoid arthritis and openly talked about as being used off-label to treat people with MS.  So where are the study results for the use of rituximab in MS?   In Rituximab in relapsing and progressive forms of multiple sclerosis: a systematic review, the author reports there have been four clinical trials  – with the author’s conclusion  “Despite the frequent mild/moderate adverse events related to the drug, rituximab appears overall safe for up to 2 years of therapy and has a substantial impact on the inflammatory disease activity (clinical and/or radiological) of RRMS. The effect of rituximab on disease progression in PPMS appears to be marginal.”

Why haven’t there been more than a few trials to look at ritiuximab and MS?  I can’t give you an official answer but we know it is extremely costly to conduct a clinical trial, and not so coincidentally,  we also know that rituximab loses its drug patent protection  this year (2015) meaning it will soon be available in a generic form.  There would be no great amount of money to be made by proving rituximab is effective in treatment as well.

Then again, maybe ocrelizumab  really is different enough to have a significant effect on PPMS.  Either way, I will be watching the news along with everyone else to see what the assembled  chorus behind ORATORIO and OPERA has to say and hope the results are sweet music for the people who live with PPMS.

be well,








Consortium of MS Centers Meeting Roundup


Late May I had the good fortune of attending the annual Consortium of MS Centers meeting, held this year in Indianapolis.  I am still working on articles from the vast wealth of information I gathered there, but want to share what has been posted on MultipleSclerosis.net.  Following is an index and brief cut from each of the topics; I hope there is something here that catches your attention and you’ll want to read more.


Multiple Sclerosis & Aging

More than once I’ve wondered to myself and questioned others about the aging population of people with MS and what adjustments to our care might need to be made. The current state of medical treatments make it possible to live longer, and although that is a very good thing it also complicates our medical care.



Challenges of Progressive MS Research

How well do we understand progressive MS today? was the closing keynote address for the Consortium of MS Centers annual meeting, given by Alan Thompson, MD. He is a leading authority on progressive multiple sclerosis and Dr. Thompson  is on the faculty of Brain Sciences, University College London, and serves in high level positions of the boards of MS international Federation, the International Progressive MS Alliances, and the National Multiple Sclerosis Association. He serves as the editor-in –chief for Multiple Sclerosis Journal.

I had the opportunity to ask Dr. Thompson at an advance press briefing if he could identify what was the driving force behind the recent initiatives to find answers about progressive MS. For quite some time the majority of the research and attention has been focused on Relapsing Remitting MS (RRMS), according to Dr. Thompson, and he strongly expressed the research community should be ashamed of themselves for waiting so long to take a harder look at progressive forms. He said part of the push for progressive MS research is because the MS patient community has been vocal about the need.




Meet the Professor: Gavin Giovanonni, MD

In almost every area of endeavor there are those people who do work that rises above the rest, making them stars even among others who also accomplish great things. There are a lot of people who write blogs about MS and there are a number of them who shine above the rest with really stellar work. But then there are the superstars – those few writers who can be trusted to always get the information correct and add their own touch, making their blog not only enjoyable to read but also crammed full of information. Gavin Giovanonni, MD., is one of those superstars of the MS blogosphere.




MS Wellness: Body, Mind and Spirit

It was late Friday afternoon at the annual meeting for the Consortium for MS Centers and after three days of intense science and medical discussions, many of which involved words I can barely spell let alone understand, my brain was ready for a break. I scanned the program schedule again and came down to two final options for a happy hour presentation – after all it was after 4:00 PM on Friday.



Where to Turn: MS Drugs, Babies and Assistance

Do you know about MotherToBaby or the Assistance Fund? Don’t feel alone if you don’t, because I didn’t either until recently when I attended the annual meeting of the Consortium for MS Centers….



Lemtrada: Some Facts

The newest multiple sclerosis drug approved in 2014 was alemtuzumab, trade name Lemtrada.  One of the early morning (7:00 AM) presentations I attended at the recent Consortium for MS Centers annual meeting,Independently Supported Symposium (#7): Management of Alemtuzumab Infusions for Patients with Relapsing MS, was sponsored by the drug’s manufacturer, Genzyme, and was for people who work in clinics that administer or plan to give Lemtrada. The presentation was full of facts and an opportunity for me to learn more about the minute details of Lemtrada, since it is still in its infancy of use here in the US.



MS, Cannabis & Cognitive Function

Anthony Feinstein, MD, PhD. gave the lecture – MS, Cannabis and Cognitive Dysfunction: Insights from Brain Imaging, to a standing-room only crowd at the opening presentation for the Consortium for MS Centers annual meeting in Indianapolis. He is in the Department of Psychiatry at the University of Toronto, and his research into this topic was funded by the National MS Society of Canada.

Dr. Feinstein began by tracing the roots of the drug back to the 9th century and took his audience through a timeline of cannabis use and its forms. One form was in the 19th century here in the US when it was combined with morphine and capsicum to be used as a pain killer.




Treating Diverse Populations with MS

Practical Strategies for Improving Outcomes in Diverse MS Populations was the Symposium that started the second day of the annual Consortium for MS Centers meeting in Indianapolis. This is a topic of special interest to many people because of the differences in how people react to treatment, depending on their ethnic and genetic background. It was a panel presentation and these are the topics of each presenter and my summation of their text and comments.



Marijuana Use by MS Status and Disability

Do you participate in NARCOMS surveys?  That would be the North American Committee on Multiple Sclerosis and their patient data surveys that are generated twice a year and is a longitudinal study tracking our MS and various symptoms and progression. In addition to their regular surveys, they will on occasion conduct special targeted surveys and such was the case with a survey regarding attitudes toward marijuana use among people with MS. Stacey Cofield, PhD, is the lead investigator for this project and I had the opportunity to talk with her about the survey results at the Consortium for MS Centers annual meeting, held in Indianapolis.

The survey was created as a response to NARCOMS participants’ suggestion that they include questions about medical marijuana use in their surveys.



MS & Comorbidities

Comorbidity seems to be the word of the day lately in all types of multiple sclerosis discussions. Medical conversation, reviews and scientific manuscripts, link many other chronic conditions such as obesity, depression,  rheumatoid arthritis and type 2 diabetes to multiple sclerosis as a comorbid companion.

Comorbidity –  the word sits with me like a newly introduced phrase that is popular at the moment because I keep hearing and reading it everywhere, and when I went looking for the root meaning of the word I stumbled upon this handy little tool from Google books which charts the use of words in books over a period of time. Not surprising to me, the word comorbidity does not even appear in a book until the 1980’s, but has taken off in use since that time.1







You & I Conquer MS


iConquerMS™ sounds like a solitary activity, doesn’t it? But imagine if a bunch of us with Multiple Sclerosis got together and from all of us sharing notes on our individual histories we develop new data and ideas that will give researchers a bigger look at MS from our experiences.

Moving data from being a single contributor to collecting the data from many is often called BIG DATA and iConquerMS™ is looking to create some of the biggest data yet on MS.  We can’t do this alone – we need each and every one of you to join.

iConquerMS™ is an online patient portal led by the Accelerated Cure Project (ACP),  a non-profit organization that  has the ultimate goal – to find a cure for MS.   ACP received the funding from the Patient-Centered Outcomes Research Institute (PCORI) to develop iConquerMS™.  I have been involved with ACP and this project for over a year and can say I have never worked with a more sincere and dedicated group of professionals than their small but mighty staff. They have earned my trust and respect.

Remember the part of PCORI that stands for Patient Centered?  I am proud to say that the majority of people on the Governing Board, and the other committees that are overseeing iConquerMS™ and making the critical decisions and choices are just like you and me – people with multiple sclerosis.  This project could not be more patient centered than it is already.  Patients helped design it, patients run it, and it will be successful because patients will join and contribute their own data.

As people living with Multiple Sclerosis we often complain that we aren’t recognized as experts on the disease.  Who else besides us really knows what it is like to live in a body with MS?  We have knowledge that others don’t … our own experiences.  And now, through iConquerMS™ we can share those experiences and our information and together all of us are poised to make a difference.  If you’ve paid attention to the medical news in recent years, patient centered care is part of our health care reform – isn’t it about time you and I are the important ones in our health care?

The idea behind iConquerMS™ is really quite simple  -there is a web portal at iconquerms.org where people with MS create an account, complete some basic surveys, share their health records, and propose questions that researchers might study.

I am also happy to tell you that every one of the major MS organizations in the United States have endorsed iConquerMS™, including NMSS, MSAA, MSF and CanDoMS.  Not only have they endorsed it, leaders from each of these groups participate on the various committees.  They believe in the work of ACP and what iConquerMS™ can do for the future of MS research. There is a lot more information about this project, who is involved and what you can expect on the website and I hope you will take the time to learn more.

This is my brief outline of what you can expect to do when you join me at iConquerMS™:

  • Register at iconquerms.org. You will find informed consent information that tells you the details on how your data will be used and how it will be de-identified so your individual identity is not attached to the records
  • Enter your demographic data – we really do need to know those basic things about you to help figure out where you fit in the Big Data picture
  • Complete some surveys about life with MS –you have probably done these at other times for your doctor but are very important to add to our Big Data
  • Share your electronic health records – there are great instructions on how you can do this and you can always contact someone at iConquerMS™ for help if you get stuck on this part
  • Submit your questions of what you think researchers should take a closer look at – the research committee, made up of people with MS and key scientists will sort through our questions and make recommendations
  • Then share your experiences with iConquerMS™ with everyone you know – to gather really Big Data, we are aiming for 20,000 participants and we need your help to spread the word and recruit others
  • Expect to receive updates from iConquerMS™ via email (you can always opt out of these) on data gathering and research interests

I won’t lie and tell you all of this is easy – because it isn’t. It’s going to take some time to work through all of these bits of information and iConquerMS™ is designed so you can start and stop your entry of data when you need to take a break.   But it obviously hasn’t been easy to find a cure for MS either since that hasn’t been done yet – and who knows what one key piece of our collective information might unlock the answer.

Isn’t it  worth our time and efforts to try to find the answers? I want to be able to say we conquered MS  through iconquerMS™.  This is only going to happen when we all join together and I hope you will accept this invitation and register today.

Be well,









Experience Shapes What we See


We have an assortment of wildlife living in our suburban neighborhood, much beyond the normal squirrels, chipmunks and song birds.  We have birds of prey – the red shoulder hawk in particular – that keep watch from above.  Another fox family has been born in the thick trees of our neighbor’s backyard and they wander around day and night.  In case you still wonder what does the fox say, it is an other worldly squawking and calling sound, especially in the middle of the night when we are trying to sleep.


Most recently we have an adult doe who has been making the rounds of our back yard- she wanders through, nibbling on the weeds of which there are plenty, and she doesn’t seem particularly bothered by my stepping out on the deck to watch her and snap a photo or two.   I posted this picture on my Facebook page and immediately was given a lesson in how we apply our own experiences and perceptions to a particular situation.


What do you think of when you see my pictures?


I am always in awe of these creatures even though I know they are not necessarily benign.   Many people responded to the beauty of this deer peacefully lounging in my backyard.  Who could argue with that view?





A friend immediately chimed in that she wished she could see the beauty but all she could picture was ticks.  You see, she had been ill for several years from Lyme Disease, a serious infection caused by the bite of the tick carried by deer and other wildlife.  From her experience, there was nothing beautiful in my photo.


My sister had the  flashback of having extensive damage done to her car when one of these beautiful creatures bounded onto the highway in front of her one autumn evening.  Our daughter had that same misfortune and totaled her car with a deer strike, but she saw this backyard deer and was still mesmerized by its presence.


Then there are my hunter friends  – they spend hours and more hours in fields and woods waiting to cross paths with a deer this size.  They are also the same people who process the meat and eat off their kill for many months.  Their pulse quickened a bit when they saw the picture of this deer just hanging around in my yard.



deer 2 What does this have to do with anything other than I have some interesting  photos of wildlife in my otherwise quiet neighborhood?



I offer this as an example of how people can take the same thing – in this case the deer– and come away with very different interpretations of what they see.  I see this happen quite often when people with MS read the same news or research and come away with different ideas.  Take CCSVI or the latest diets or hyperbaric oxygen treatment or any of the other unproven MS treatments and you’ll see this in full action.  There is such a strong desire, no make that a strong need, to find a cure for MS, that it is easy to interpret  the headlines into something other than what it says based on our own biases and preconceived ideas and needs.


Each cure we read about means we also must stop and wonder how are we reading the news – is it because it says what we  want  depending on our perspective and experiences, or is it based in fact?  I am a Pollyanna by nature and want to think one of these ‘cures’ might really work,  but the realist in me recognizes the science doesn’t hold up to the proof process.    That doesn’t mean I can’t still stop and wonder if the next ‘cure’ might hold up, and want to learn more about it  – but have to keep in mind my personal perspective helps to complete the story.


I will also look at this deer the next time and not only see beauty, but wonder about the ticks and look closer for any bow and arrow yielding hunters closing in.

be well,









The Advertising Pitch


We had a good laugh as my husband sorted through the coupons that arrived in our mail – it was an envelope full of special offers and near the top of the stack was a coupon for breast augmentation – only $3,850, including anesthesia.  Boy I’m glad to know at least they knock you out while you have this done.  A few more coupons down in the stack, just after the one for the $39 hour massage to celebrate a new studio opening, was an invitation to come to a local funeral home to do our pre-planning.


What happened to the simpler times when these coupons involved buy one get one free pizzas and special deals on moonlight bowling? The face of marketing has changed, complex services are being peddled as common merchandise; even the pharmaceutical companies are doing all they can to get their product or service on our radar.

Websites that talk about Multiple Sclerosis are often populated with ads – you know the ones that are promoting the latest treatments or product that might make our lives better.  The cost of maintaining a website, complete with a staff to keep the content fresh, isn’t cheap, and selling ad space to pharmaceutical companies is one way to bring in operating revenue.


Virtually all of these ads are specifically targeted to me and what they are guessing might be my interests.  Tracking of what I look at online is captured through cookies and pretty soon,  ads that mimic my interests pop up on my screen.  I was shopping for some special style of orthopedic shoe and for the next month,  my computer screen was visited by shoe ads by a variety of different manufacturers.  Of course I am regularly looking at multiple sclerosis information on line and those visits trigger ads for MS treatments to populate my viewing screen.  Often those are from reputable companies, but I also get ads for special diets and unproven surgical procedures performed in exotic locations like Costa Rica and Bulgaria.


When doing research for writing, the  search terms  I might use often lead to an interesting  assortment of pop up ads – try it yourself and see what you get if you google for MS and sexual dysfunction.   Or MS and incontinence.  Or MS and marijuana.   I’m sure you get the gist of my point, when I search the right words,  I get lots of Viagra, adult toys, catheter supplies, and bong  advertisements thrown my way.


I’m resigned to those ads and how most websites have to do business with advertisers to cover their expenses and make a profit. Most of them I could simply ignore, but I still often have trouble with some of those ads, mainly because their fancy colors and animation often interfere with my vision, focus and also the speed of my computer.  I could turn off the cookies in my computer, but many sites these days require the cookies to be set before you can even enter their website.


I found a great ad blocker software that is free – they ask for donations to support their work and I gladly give them a small amount of money to support their product – and it keeps most of the pop-up ads away from my computer.  Since I installed this software on my new laptop in February, the counter tells me I have been spared seeing   over 100,000 download ads.


I say most, because even AdBlockPlus lets some ads through – they call these ‘acceptable ads.’  It is an acknowledgement that advertising revenue is necessary to sustain most of these sites.  There is a long list of criteria that makes an ad acceptable, and this includes no animations, nothing with sound and preferably text only.


Social media sites such as Facebook and Twitter also generate income for their sites by selling prime spots on their pages to advertisers. Unfortunately, the ad-block software doesn’t stop those messages and in between messages from friends and sharing jokes and pictures of children and grandchildren, those ads slip into our feeds.


Advertisers have their fleeting chance to get us interested in their products and it takes a lot these days to get our attention since we are bombarded at what seems like every opportunity.  Whether it’s a mailing to my home or ads on my computer, most of them end up deleted or in the trash – if I am shopping for MS drugs or breast augmentations, I want to do my own searching.


Be well,






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:


Wishing you well,



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



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



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)”



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.