Looking for Answers?


We all have questions about multiple sclerosis  – living with it, treating it, finding ways to make it take a back seat in our lives.  We also often lack good resources to hunting down the answers.


That is why I try to attend as many of the live MS programs as possible.  Yes, they are usually sponsored by the drug companies and I have to hear the official program first before satisfying my own curious thoughts.  But at the end the speakers are usually open to taking additional questions and it’s always great to have mine and those of others answered for free by the experts.  They often even toss is a free meal … free everything except for the cost of transportation to get to the venue is a good thing, right?


There’s an education  program out there that skips all the promotional materials and goes straight to the heart of what we want – the MS Views and News, delivered commercial free.  This non-profit organization out of Florida gets its sponsorship money from the pharmaceutical companies but does not endorse any particular brand,  All the money they receive is unconditional use money and MS Views and News, under the direction of their leader Stuart Schlossman, puts that money to great use by providing education programs that cover a wider range of topics.


They have recently expanded their reach beyond Florida and have ventured as far north as Michigan and east into the Carolinas.  A complete listing of upcoming programs can be found on the  MSVN Events Calendar .  They have a program in Indianapolis coming November 18 and I will be there –  stop and introduce yourself if you happen to be a participant in the Hoosier state. Take a look and see if one of their programs is coming close to you soon and plan to attend.


If you can’t make it to a live program , they almost always record their programs and then have them posted on their website.  you can view those from the comfort of your own home.

MS Views and News has its Learning Channel on YouTube 

Live or recorded, please take advantage of this incredible resource – you will learn something and that’s always time well spent.

be well,



Ocrelizumab and Biotin’s Race for PPMS Treatment


ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis), concluded their 2015 annual meeting with ‘late breaking news’ sessions, which included the results from two separate drugs being looked at for treatment in primary progressive MS (PPMS).  This is significant, because as most of you know, PPMS has no official, authorized disease modifying therapy, although several drugs are used off-label.

One drug for PPMS has gotten most of the attention- that would be Ocrelizumab.  The other one in the shadows is Biotin.  I offer here the abstracts for both of these drugs so you might learn a bit more about them and the trial outcomes, although there are still many details outstanding. Note at the end of each, they give more information about the researchers on the project and their affiliations. Yes, there are many of  us who do like reading these, even if all the information doesn’t make complete sense. 


Be well,




Abstract: 233

Type: Oral LB

Abstract Category: Invited / Oral LB / Poster LB

Introduction: High doses of Biotin, a co-enzyme for acetylCoA carboxylase, a potentially key-enzyme in myelin synthesis, was evaluated over placebo in patients with progressive multiple sclerosis (MS).

Methods: MS-SPI is a randomized, double-blind, placebo-controlled (2:1) trial of oral biotin 300 mg / day in patients with secondary (SPMS) or primary (PPMS) progressive MS. Treatment duration was 48 weeks. The primary endpoint was the proportion of patients who improved at M9 and confirmed at M12, defined as decreased EDSS or improved TW25 of at least 20%. Main secondary endpoints included mean EDSS change, clinical impression of change (CGI and SGI).

Results: 13/103 (12·6%) of MD1003-treated patients achieved the primary endpoint versus none of 51 placebo-treated patients (p=0·0051). The primary endpoint was confirmed by a significant decrease in the mean change EDSS, CGI and SGI in the MD1003 group. The proportion of responders was higher in patients (1) with a baseline EDSS score in the [4.5;5] range compared to patients with a baseline EDSS score in the [6;7], (21.4% versus 9.3%); (2) with no concomitant fampridine administration compared to patients with concomitant fampridine administration (20.7% versus 2.2%) and (3) with SPMS, compared to PPMS (14.8% versus 9.5%). Treatment with MD1003 significantly reduced mean EDSS scores, CGI and SGI in the sub-group of patients with SPMS, and in patients with or without concomitant fampridine administration. Although similar trends were observed in the PPMS subgroup, results were not statistically significant.

Conclusion: Biotin significantly improved MS-related disability and decreased the risk of progression in patients with progressive MS. The effect was more pronounced in patients with SPMS although the relative low number of patients with PPMS in the study precludes robust conclusions. Patients with concomitant treatment with fampridine benefited from biotin in terms of decreased risk of progression and clinical global impression.

Sponsored by Medday Pharmaceuticals


AT is the principal investigator and discloses travel grants from MedDay

FS is CEO and a shareholder at MedDay Pharmaceuticals (the study sponsor)

CL-F ,GE, MC, CP, SV, JD, MD, PC, OG, GD, D-ALTM, PL, BB JP have nothing to disclose in relation with this abstract





Abstract: 228

Type: Oral LB

Abstract Category: Invited / Oral LB / Poster LB

Background: Primary progressive multiple sclerosis (PPMS) accounts for 10-15% of the MS population. There is currently no approved disease-modifying treatment for PPMS. B cells are believed to contribute to the pathogenesis of MS, including PPMS. Ocrelizumab (OCR) is a recombinant humanised monoclonal antibody that selectively targets CD20+ B cells.

Objectives: ORATORIO is a Phase III, multicentre, randomised, double-blind, placebo-controlled study aiming to assess the efficacy and safety of OCR in patients with PPMS (NCT01194570).

Methods: Patients were randomised (2:1) to receive OCR 600 mg (given as two 300 mg intravenous infusions 14 days apart) or matching placebo every 24 weeks for at least 120 weeks or until approximately 253 three-month confirmed disability progression events occurred. Eligibility criteria included an age of 18-55 years, a diagnosis of PPMS (2005 revised McDonald criteria); Expanded Disability Status Scale (EDSS) score of 3.0-6.5 at screening; disease duration (since MS symptoms) of < 15 years in patients with an EDSS score of > 5.0 at screening and < 10 years in patients with an EDSS score of ≤ 5.0 at screening; and documented evidence of elevated immunoglobulin index and/or presence of oligoclonal bands within the CSF. The primary endpoint is time to onset of confirmed disability progression, defined as a ≥ 12-week sustained increase in EDSS score.

Results: Overall, 732 patients were randomised at 183 sites. Mean age at baseline was 44.6 years; 49.3% of patients were female and 94.1% were white. Mean (standard deviation, SD) baseline EDSS score was 4.70 (1.17); mean (SD) duration since MS symptom onset was 6.48 (3.89) years; and mean (SD) duration since PPMS diagnosis was 2.82 (3.22) years. The number of patients untreated with any MS medication in the prior 2 years was 656 (89.6%). At baseline, 26.4% of patients had gadolinium-enhancing (Gd+) T1 lesions; mean (SD) number of Gd+ T1 lesions was 1.0 (4.31); median (min-max) volume of T2 lesions was 6.96 (0-90.3) cm3; and mean (SD) normalised brain volume was 1464.99 (85.96) cm3 on brain magnetic resonance imaging.

Conclusions: The ORATORIO baseline characteristics are consistent with disease characteristics of a PPMS population. As the primary endpoint is an event-driven analysis, the treatment period will be extended until approximately 253 three-month confirmed disability progression events have occurred. The results from this study will be presented after this target is reached.


Research funded by F. Hoffmann-La Roche Ltd., Basel, Switzerland.

Xavier Montalban has received speaking honoraria and travel expenses for scientific meetings, has been a steering committee member of clinical trials or participated in advisory boards of clinical trials in the past years with Bayer Schering Pharma, Biogen Idec, Merck Serono, Genentech Inc., Genzyme, Novartis, Sanofi-Aventis, Teva Pharmaceuticals, GSK, F. Hoffmann-La Roche Ltd., Almirall, NMSS and MSIF; he is also Editor for Clinical Cases for MSJ.

Bernhard Hemmer has served on scientific advisory boards for F. Hoffmann-La Roche Ltd., Novartis, Bayer Schering, Merck Serono, Biogen Idec, GSK, Chugai Pharmaceuticals, Micromet, Genentech Inc. and Genzyme Corporation; serves on the international advisory board of Archives of Neurology and Experimental Neurology; has received speaker honoraria from Bayer Schering, Novartis, Biogen Idec, Merck Serono, F. Hoffmann-La Roche Ltd. and Teva Pharmaceutical Industries Ltd.; has received research support from Biogen Idec, Bayer Schering, Merck Serono, Five Prime Therapeutics Inc., Metanomics, Chugai Pharmaceuticals and Novartis; and has filed a patent for the detection of antibodies and T cells against KIR4.1 in a subpopulation of MS patients and genetic determinants of neutralising antibodies to interferon-beta.

Kottil Rammohan has received honoraria for participating in advisory boards and consulting for Acorda, Biogen Idec, EMD Serono, Genentech/F. Hoffmann-La Roche Ltd., Genzyme and Teva; he has also received grants from Accera, NIH and NMSS.

Gavin Giovannoni has received honoraria from Abbvie, Bayer HealthCare, Biogen, Canbex, FivePrime, Genzyme, GlaxoSmithKline, GW Pharma, Merck Serono, Novartis, Protein Discovery Laboratories, Roche, Synthon, Teva Neuroscience, UCB, and Vertex; research grant support from Biogen, Ironwood, Merck Serono, Merz, and Novartis; and compensation from Elsevier as co−Chief Editor of MS and Related Disorders.

Jerome de Seze has nothing to declare.

Amit Bar-Or has received personal compensation for consulting, serving on scientific advisory boards and/or speaking activities from Bayer, Bayhill Therapeutics, Berlex, Biogen Idec, BioMS, Diogenix, Eli Lilly, Genentech Inc., GSK, Guthy-Jackson/GGF, Merck Serono, Novartis, Ono Pharmacia, F. Hoffmann-La Roche Ltd., Sanofi-Aventis, Teva Neuroscience and Wyeth.

Douglas Arnold reports equity interest in NeuroRx Research, which performed the MRI analysis for the trial, and consultation fees from Acorda, Biogen Idec, Genzyme, F. Hoffmann-La Roche Ltd., Innate Immunotherapeutics, MedImmune, Mitsubishi Pharma, Novartis, Receptos, Sanofi-Aventis and Teva.

Annette Sauter is an employee and/or shareholder of F. Hoffmann-La Roche Ltd.

Algirdas Kakarieka is an employee and/or shareholder of F. Hoffmann-La Roche Ltd.

Donna Masterman is an employee of Genentech Inc., a member of the Roche Group.

Peter Chin is an employee of Genentech Inc., a member of the Roche Group.

Hideki Garren is an employee and/or shareholder of F. Hoffmann-La Roche Ltd.

Jerry Wolinsky has received compensation for service on steering committees or data monitoring boards for Novartis, F. Hoffmann-La Roche Ltd., Genzyme and Teva Pharmaceuticals; consultant fees from AbbVie, Actelion, Alkermes, Athersys Inc., EMD Serono, Forward Pharma, Genentech Inc., Genzyme (Sanofi), Novartis, F. Hoffmann-La Roche Ltd., Teva and XenoPort; and research support from Genzyme, Sanofi, the NIH and the NMSS through the University of Texas Health Science Center at Houston (UTHSCH) and royalties for monoclonal antibodies out-licensed to Chemicon International through UTHSCH.

Biogen’s Blue Pill Message Misses the Mark


Dear Biogen,

Upfront I have to ask – What on earth are you thinking with  your recent drug campaign?  I’m talking about Biogen’s multiple sclerosis drug Tecfidera commercial that is now running on national television.  The first time I caught it, I missed the opening and only saw the ‘consult your doctor’ finish- little did I know I missed the parts that would drive me  and many others crazy. I have now seen it several times but if you are not sure which ad campaign I’m talking about please  take a moment and watch it at bit.ly/1OpEUpQ .  After watching it, my comments which I posted at that  site  and here will make sense.

Multiple sclerosis treatment shouldn’t be shown as another ‘tiny blue pill’ ad like Viagra, but that is certainly the message that screams at me from this one.  You show everyone  that if we take this blue pill once a day we can do anything.  I am the first one to be encouraging,  but your ad takes it beyond that. Even people with ‘normal’ health will not hike, swim and go to the fair in one day and still look so good; someone with MS would be out of the day before they hit noon.

It’s the closing of the ad with the shot of the couple on the ferris wheel looking longingly at each other that puts this over the top:  the unknown person holding the blue pill (ok, it’s a capsule but you get the point) in front of them, then the voice over warning of not getting pregnant is a show stopper.  Damn, that could be humorous playing Tecfidera as a Viagra wannabee, but sorry, it is definitely a mood killer for the sex the person with MS  might be contemplating when your voiceover artist has to remind people they might die from this drug because of the rare but often fatal PML.  Your ad agency couldn’t get the timing right on this one no matter how hard they try.


An ad for an MS drug might slide by under the radar, and not make so many of us angry  and disappointed with Biogen  if it weren’t for:

1) It misrepresents MS and perpetuates all the myths we fight regularly but especially  the one that others often think we can just take something like this little blue pill and get over and  above our MS. Thanks for that help, Biogen. You just undermined the struggles of people with MS who are challenged regularly with the misperception and accusation of ‘but you look so good.’

2) A boat load of money was spent to produce this commerical as well as  purchase the television time. How  many people do you really think are going to change therapies because of a tv ad? This was a tremendous waste of money that could have been put into services we could benefit from or donated to a non-profit that provides direct help.

3.)  Your stockholders deserve better use of  profits than this low return on the dollars spent. If you spend this much money on creating an ad, and buying prime commercial time during the network news but then only a few people are convinced to change, what did that cost per person?  I know we listen more to our doctors than to a 60 second television commercial when it comes to selecting our treatment.

4) There’s nothing sexy about MS. Or am I missing out on a side benefit of living with multiple sclerosis?  If a little blue capsule would really make this all better, sign me up now and I’ll ride that ferris wheel around and around.
Tecfidera might be a fine drug but this isn’t the way to deliver  your message. Biogen’s team used to do a great job of understanding us but as of late you seem to have lost sight of the true north.

Please take this ad down, now. Stop running it in the morning, noon and at night on national airwaves. It is doing more harm than your creative marketing team imagined.



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,








NARCOMS Now Spotlight


I’m sending a thank you to NARCOMS, for the mention of my blog and advocacy work in the Fall 2015 issue of NARCOMS Now.   NARCOMS was the first patient registry I signed up for when I was diagnosed with MS in 2008, and I continue to tell people the importance of sharing their information through their  longitudinal study.  My work with iConquerMS™ as a patient driven registry fits nicely with NARCOMS academic research focus.  There are many people doing wonderful things in the MS community and it’s too bad they can’t all be spotlighted.

People living with MS can join both of these initiatives to help researchers move closer to a cure.

NARCOMS Now’s article MS Apps (& BLOGS)  is available at narcoms.org/narcomsnow/msapps/fall2015

Writng this blog as well as authoring articles for MultipleSclerosis.net allow me to share my experiences and knowledge and I hope readers continue to follow along.






Mary Poppins’ Treatment for MS


Often something about multiple sclerosis will pop up in my news feeds or on my Facebook page that makes me wish I had a buzzer and could give it a giant  X.  To this point I offer this image that was on my facebook page today that makes it appear treating MS is as simple as a dose of cough syrup.  If only it were this simple – where is Mary Poppins and her spoonful of sugar when we need her?.


stop ms attacks

Which Are You:  Yes, No or Sort-of?


You know about iConquerMS™ right?  You can’t be one of my regular readers and not have read  a mention or two of this initiative and its importance to changing multiple sclerosis research.  We are actively looking for people who live with MS to join us at iConquerMS.org and share their health care information.  If you don’t have MS, we welcome you too in our portal to register as a control.

This health care information will be used by researchers who have been approved by a patient-governed research committee to answer research questions that have been posed by the members of iConquerMS™. We’re looking to do research that truly matters to people living with MS and can make a difference.

The great news is our funding for iConquerMS(TM) has been extended for another three years, into Phase 2.  But we are also still working to wrap up the work of Phase 1, which brings me to this question….

Have you joined iConquerMS™?

There are only three possible answers- yes, no or sort-of.

I’ll start with the one that perplexes me – if you said NO, can I ask why not? All the information submitted is de-identified and put together with the information from the other 2,200+ people who have already joined. You can do this from the comfort of your home, and only need access to a computer to help. We need 350 additional enrollees by the end of September, which is the end of Phase 1 and I hope you will be one of them. Please change your answer from NO to a YES, go to iconquerms.org and enroll today. Thank you.


If you said SORT OF, that means you signed up but didn’t get everything done.  Maybe you got distracted and forgot to go on and complete the surveys.  Maybe you took a break and got tired.  That’s ok – those surveys are still waiting for you to finish.  We have a percentage number for Phase 1 that requires so many people to complete ALL of the posted surveys.  Please take the time now to visit your account at  iConquerMS.org and finish what you began. We need all of you and your survey answers, and not just a part. Thank you.


YES means you are all in, you have completed all of the surveys and have made the commitment to help guide MS research.  Bravo! and I thank you and all of the people associated with iConquerMS™ and multiple sclerosis thank you.  You have followed through on your commitment to find a cure to MS. Can I ask one more thing of you at this time? Have you also shared a piece or two of your Electronic Health Record (EHR) through www.iConquerMS.org?  Our Phase 1 goal has a need for a small number of our participants to upload at least one health record, so that the viability of collecting EHRs may be demonstrated.  This doesn’t have to be complex – it could be as simple as a copy of your latest lab work or your doctor visit summary.

Regardless of whether you answered Yes, No or Sort-of, our work is far from done and we will continue to need your support.  Please do your part today, use the power of your data, and help us Conquer MS.

Be well,




July-August Updates


It’s been another crazy couple months with lots of summer activities, travel and now back to work.  Before it gets any later, I want to share this recap and links to my writings for multiplesclerosis.net from July and August. As usual, I’ve written on a wide range of topics and I hope there is something in here that you will find informative and useful, or at least entertaining.  Of special note, please take the time to read my two part interview with artist Lydiaemily.

be well, Laura


MAD about MS: Lydiaemily

By Laura Kolaczkowski—August 22, 2015

Lydiaemily declares it up front – “I definitely am thinking ‘let’s go’, I know the bus is coming. What can I do before the bus gets here.” She lives with Secondary Progressive MS and knows her future might hold a bleak outcome.

After my recent chat with this artist, I can tell you one thing – she is not standing on the corner waiting for the bus to come. You won’t even find her at the bus station sitting in air conditioned chairs waiting. Lydiaemily is out on the streets, spreading the word of multiple sclerosis through her murals being painted on the outdoor building walls of NMSS chapters around the country. Her goal is to paint one for each chapter, and raise awareness about MS.


MAD About MS: Lydiaemily (part 2)

By Laura Kolaczkowski—August 25, 2015

This is the second part of my interview with the MS mural artist, Lydiaemily, who is Making a Difference (MAD) About MS. In Part 1, we discuss her work on the MS Mural project and her own life with multiple sclerosis.


Florida Nightmare: Wrongly Diagnosed with MS

By Laura Kolaczkowski—August 19, 2015

Perhaps by now you have heard the story of Sean Orr, a physician at Baptist Medical Center, Jacksonville, Florida, who has been exposed for diagnosing people with multiple sclerosis when they really didn’t have it. The story aired on NBC Nightly News, August 18, and is all over social media. The MS Community is shaking their head at this story and many shaken enough to question their own care as well.


Weather or not, here I come

By Laura Kolaczkowski—August 16, 2015

So much of our country has seen extreme weather this year and it continues to be unpredictable and in some cases unbearable. How about the winter months where so much of the northern US was buried – literally – in snow? I watched the headlines and chatted with friends in the Boston area through those dark days and wondered how they would continue to function in spite of their weather.

The extreme weather patterns seemed to have shifted and Mother Nature set her site on the Midwest, including my home state of Ohio. Talking with a person this weekend, she had told her friend we have only had rain twice this summer – one time for 11 days and the other for 17 days. She’s not far from the truth. It has rained almost every day since the calendar flipped to June.


The Spirit of Louisville

By Laura Kolaczkowski—August 8, 2015

This sounds like the name of a vintage aircraft or even perhaps a drum and bugle corps, but it’s what I see thriving in the multiple sclerosis community in that fine Kentucky town. I had the good fortune to travel to Louisville to be a part of the annual Norton Neuroscience Institute’s Making Connections Neuroscience Expo. This was a large gathering of people living with a variety of neurological disorders, along with speakers and exhibitors. All told, there were over 1,000 people present for this event. I was there to talk about iConquerMS™ as well as staff a booth in the exhibit area with more information about this patient led Multiple Sclerosis initiative. My talk was well received, or at least people appeared to be listening and there were even a few people nodding in agreement with my comments


Take Ten: Ways to Make the Day Better

By Laura Kolaczkowski—August 4, 2015

Whether you have multiple sclerosis or not, it is way too easy to get into a routine that seems never ending. Here are my ten ways to take the chance to change the day and make it better.


A Closer Look: The National Multiple Sclerosis Society

By Laura Kolaczkowski—August 2, 2015

We’ve heard about Walk MS, Ride MS, Run MS, and the other fundraising functions of the National MS Society (NMSS) but what else do we know? If you are like me, I was a bit fuzzy on the details and went to the top for some answers. Eddie Rauen, President of the Ohio Valley Chapter (OVC) which is also the chapter area for me personally, took time from his hectic schedule to talk with me about the functions of NMSS and how they support those of us living with MS. He gave me so much to share that I have split it into separate parts – how the Society operates at the national level and then a closer look at how his chapter office serves their clients and his personal connection with MS.


Take me away…..

By Laura Kolaczkowski—July 28, 2015

Those of us of a certain age will certainly remember the advertising campaign for a bubble bath product that would plead ‘Calgon, take me away’. The obviously distressed woman stands in front of a spinning background reminiscent of a scene from Vertigo and laments about the traffic, her boss, the baby and the dog. A soothing male voice from off screens says ‘lose your cares in the luxury of a Calgon bath,’ as we see her soaking in a bubble bath, calmly saying ‘I love it.’

If only it were that simple.


M.A.D. about MS – Stuart Schlossman

By Laura Kolaczkowski—July 21, 2015

Stuart Schlossman is the founder and President of MS Views and News, a clearinghouse for multiple sclerosis information and programs. His website is jammed full of links and videos, including many of the blogs you have seen here on MultipleSclerosis.net. Anyone who has been in Stuart’s presence knows it’s hard to get him to stop and do just one thing, so it was my good fortune he took a lengthy pause in his day to talk with me about his advocacy work for the MS community. I wanted to know more on why he is M.A.D. about MS. [Image: Stuart Schlossman, MS Views and News]


Planes, trains and automobiles

By Laura Kolaczkowski—July 16, 2015

No matter what mode of transportation you might use, when traveling with a chronic disease like Multiple Sclerosis, it pays to plan ahead. Stress and fatigue can make us miserable and ruin a long-anticipatedvacation. I’ve assembled a few tips that help make my vacation times smoother and I hope they will be of use to you, too.

First and foremost, get in your mindset that no matter how well you plan there will almost always be changes and you will need to make adjustments. So flexibility goes a long way in having a good trip.


Describing MS and its Symptoms

By Laura Kolaczkowski—July 15, 2015

If we stumble, fall and snap a bone, we are obviously ‘broken’ and need to be fixed by our doctors and often require assistance from our family and friends. No one questions if we need help and medical care.

When we get sick and have an elevated temperature, it’s easy for others to see the proof that we are ill, and we might need help from our doctors and an extra dose of compassion and help from our family and friends. It’s obvious because not only do we  say “I’m not well,” there is physical evidence such as x-rays  or a thermometer reading.  In these circumstances, everyone believes us when we say we are sick – they don’t even have to see us in person to get their proof.  They will take our word for it via a phone call or someone else sharing the news.


Equal Access to DMTs for Everyone

By Laura Kolaczkowski—July 9, 2015

The MS Coalition*, a group made up of the leading MS Organizations in the United States, released a new position paper in March, regarding the treatment of MS with Disease Modifying Therapies. This review takes a look at the use of DMTs in a variety of scenarios, such as age of onset, or when to change or discontinue a DMT.

You can access The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidencein its entirety online, and it makes for some interesting reading.


Out of Control: MS Drug Costs

By Laura Kolaczkowski—July 6, 2015

People using any of the Multiple Sclerosis Disease Modifying Treatments (DMTs) have been talking about this for some time. I wrote about it in my article At What Cost Can We Continue to Treat MS in September 2014.

This should come as no surprise, but in case you don’t already know, the costs of MS Drugs are escalating out of control and show no signs of slowing, let alone stopping or dropping. This is currently a big headline getting a lot of attention thanks to a study that was presented at the 2015 American Academy of Neurology  convention.


Late-stage Multiple Sclerosis

By Laura Kolaczkowski—July 2, 2015

You may find this conversation unsettling, so please decide for yourself if you want to read on. I am discussing the worst case scenarios for people with aggressive, progressive MS, and what may be referred to as late-stage MS. This is in response to the recent MultipleSclerosis.net MS in America survey and what the respondents asked for in additional information.

When I began writing about multiple sclerosis, a common question from the newly diagnosed had the theme of ‘am I going to die from my MS?” I would answer quite earnestly – MS won’t kills us. The life expectancy for someone with multiple sclerosis is very similar to the general population and the leading cause of death for people with MS is heart disease, cancer and stroke, according to the MS Foundation.  They point out that MS affects the quality of life but not the quantity.1


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







iConquer MS needs you!


Are you Ready to Help Conquer Multiple Sclerosis?





The Accelerated Cure Project (ACP), a non-profit organization based in Boston, was founded by a person living with MS, and its sole focus has been to facilitate research that will lead to a cure for Multiple Sclerosis.  ACP has undertaken a number of exciting projects to work toward this goal, but none of them match the size of this one….  you and I have a central place to share our healthcare data and research ideas , through iConquerMS™.

This project is funded by the Patient Centered Outcomes Research  Institute (PCORI), which gathers its money from the fee paid by all of us on our private health insurance premiums.  This amount is only $1 per year per insured person, but spread across the entire US population, that adds up to some very impressive numbers.   Even more impressive is this organization is charged with finding ways to shift to patient centered health care and research.

In keeping with the patient centered approach, the majority of people guiding the development of iConquerMS™ are like you and me – people living with multiple sclerosis. Many of the leaders within iConquerMS™ are names familiar to you from being a part of the online MultipleSclerosis community, including Lisa EmrichStephanie ButlerChristie German, Dave Bexfield and Marc Stecker.

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MS research facilities and MS clinics are also represented through the presence of doctors and lead research scientists on the various committees.   Think about this for a minute – I would wager that iConquerMS™ is the first time all of these key players and organizations have been gathered into one place, a place where you and I as people living with multiple sclerosis are leading the discussion and developing the research.  And we are governing the project.

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There is so much more I can tell you about iConquerMS™ , PCORI and my involvement with both, but I want to get on to something more important – let’s talk about you.  What can you do to get involved?  Quite simply, you begin when you Join iConquerMS™ . The details of this project, the sponsors, its use and the informed consent information is on the iCnquerMS™ website, but let me share a brief overview of what you can expect to find –


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You will be asked to complete a few questionnaires that will look familiar to you  – especially the MS Neuro Quality of Life (MSNQoL) survey which most of us do regularly for our doctors or if we participate in NARCOMS. This survey is a standard tool in all types of MS studies and is a critical piece of information even though it might appear to be pretty useless.  The information from my own MSNQoL by itself means little except for me and my doctor, but if you have this completed by 20,000 people with MS, it gives a panoramic view of our quality of life.  iConquerMS™ needs this type of big data to look for our cure.


Stop and think about BIG DATA and what it will look like when we have the electronic medical records of 20,000 people who live with MS and the information that researchers will be able to glean from this big picture.


The next piece of iConquerMS™ is what I get most excited about – we have an opportunity to suggest research topics.  How many times have you wondered about your MS and a particular question comes to mind and you think it would be nice if someone looked into finding an answer?  We want your research ideas – one of us might have just the right question that unlocks one of the many mysteries of multiple sclerosis.  This word cloud is made from the research ideas already submitted –

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We are asking a lot from everyone to make this giant step to participate by sharing your health data, and investing your time in helping to build our Big Data picture for research.  But doesn’t MS ask a lot from us EVERYDAY?

Please join me at iConquerMS.org   – share the excitement and power of patient centered research!

wishing you well,