Monday, March 31, 2014

Is there a recommended diet for RA?

Often we are asked this question in the RA community.  So I decided to delve into the topic and see what the science reveals. Check out my post at HealthCentral (link below).

Read this post in its entirety:
Mediterranean-type Diet and Rheumatoid Arthritis

Friday, March 28, 2014

March 2014 Round-Up of MS News and Research

Hot Topics include:
Statins Drugs Reduce Brain Atrophy in Secondary Progressive MS
Testosterone Treatment as Complementary Therapy in Men with MS
Disease-Modifying Therapy and Postpartum Relapses in Women with MS

Read this post in its entirety:
Hot Topics and MS Research News for March 2014

Wednesday, March 19, 2014 Inspirational Stories and Aquatic Resources from MSAA

 Mary Sypawka, diagnosed with RRMS more than 20 years ago, discovered her passion for water aerobics after retiring early and making herself a priority.  Mary suffered from severe fatigue and found traveling had become difficult.  Not previously a swimmer, Mary began in the pool with water walking and later moved into aerobics.  She says simply that it “helps me feel better and I enjoy meeting people.”

Mary, who began disease-modifying therapy as soon as it was available to her many years ago, believes that staying active has helped her to maintain mobility and limit disease progression.  She is passionate about encouraging others to try the water.  “The hardest part is getting in the pool at first, but once you try it and discover how good it feels, you will probably stick with it.”

Mandy’s journey with MS began with a twitch in her left eye.  While training for a triathlon, she began having trouble running and cycling due to heat sensitivity but found swimming to be “invigorating.”  Only months after her diagnosis, Mandy lost her mother to cancer.  She then discovered that being in the pool allowed her “to grieve more appropriately.”

Mandy joined the Why I Swim campaign specifically to reach out to the newly diagnosed.  She remembers searching the internet and reading all the scary things about MS and facing the “what-if’s”.  Mandy shares her story to let others know “how much better it made me feel and to give hope to people with MS.”  Mandy believes that “just getting in the water at first” is important, but so is working with a health provider to get started.

Read this post in its entirety:

Inspirational MS Stories featured in SwimForMS Campaign, Sponsored by MSAA and Genzyme

Monday, March 17, 2014

MS Research Center Raising $300,000 to begin Stem Cell Research Study

In August 2013, the Tisch MS Research Center, led by Saud Sadiq, MD and Violaine Harris, PhD, received approval by the Food and Drug Administration (FDA) to conduct a new Phase I trial involving the use of stems cells as an Investigational New Drug (IND).  The small Phase I clinical trial will investigate the safety and efficacy of autologous, mesenchymal stems cell-derived neural progenitor cells (MSC-NPs) in the treatment of progressive MS.

Neural progenitor cells are cells that can develop into neurons and other nervous system cells, such as oligodendrocytes, encouraging neural repair and regeneration as evidenced in studies with mice (Harris, 2012).  Mesenchymal stem cells (MSCs) are adult stem cells derived from bone marrow which can differentiate into other types of cells such as neural progenitor cells (NPCs).  Autologous mesenchymal stem cells are obtained from a person’s (or animal’s) own bone marrow.

In this trial, the stem cells will be taken from each patient’s own bone marrow from which MSC-NPs will be isolated, expanded and tested prior to injection.  Patients will then receive three rounds of intrathecal (into the cerebrospinal fluid) injections of the MSC-NPs at three month intervals.  Patients will be followed for up to 27 months following the final injection.  Although similar studies have been conducted in the United Kingdom, this is the first of its kind to take place in the United States.

 Researchers at Tisch MSRCNY are excited to move forward with this clinical trial which represents the culmination of over 10 years of stem cell research.  However, this first round of research involving 20 patients is expected to cost $600,000 and can’t be completed without money.  Tisch is an independent, non-profit, research center which is funded through charitable donations. 

So, today, Tisch launched a crowd-funding campaign on Indiegogo to raise an initial $300,000 by April 14, 2014 to begin the study.  At the time of posting, they have already raised $104,980 towards their goal.  With Indiegogo, any donation amount is accepted and Tisch MSRCNY will receive the funds even if their goal is not met by April 14.  But the MS community can help Tisch meet and exceed this goal simply by spreading the word.

UPDATE (March 27):
With 18 days remaining in the campaign, Tisch has raised $203,047.  They need another $97,000!!!

Read this post in its entirety:

Tisch MS Research Center Launches Indiegogo Campaign to Raise $300,000 for Stem Cell Trial

More Information:
FDA approves unique stem cell therapy trial in MS patients. Lisa Emrich,, August 28, 2013. Accessed March 16, 2014 at

Tuesday, March 11, 2014

Brass and Ivory Named Top 10 Social HealthMakers in MS

Recently, I was recognized by as one of the Top 10 Social HealthMakers in the MS Community.  It is a pleasure to have Brass and Ivory: Life with MS and RA  included amongst such great influencers in the MS community.

Previously, I had been honored by Sharecare as one of the Top 10 Online Influencers in the RA Community

Thanks to Sharecare for the recognition and honor!!

Thursday, March 6, 2014

Carnival of MS Bloggers #153

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Laura at

Preface: this entry is about MS and mortality rates and lifespans, which some people  find unsettling to think about; it is a tough topic to consider and even harder to write. Knowing this, you may choose to return to something else to read while I try to make sense of this.

Many times over, I have said Multiple Sclerosis usually will not kill us – it can make our lives miserable and set the stage for other health problems to overtake us, but for the most part MS does not kill. Complications from MS can be serious – the most likely scenarios I think of with MS is no longer being ambulatory, and eventually being bed-ridden.  People who are bedridden or even those who are in wheelchairs, can develop problems with circulation. They easily can get pneumonia.  Even simple bed sores from sitting or lying in one position too much can create infections that are often impossible to cure. Infections from UTI’s can go unnoticed for longer periods of time.  Swallowing for some people becomes difficult and aspiration or choking could be lethal.   But the MS – our autoimmune system turned onto ourselves – is not directly to blame, it is just complicit in our decline.

When first diagnosed, I read somewhere  the average life span of a person with MS used to be about 7 years less than the non-MS person.  I also read that the advent of Disease Modifying Therapies (DMTs) had changed that picture and now there was very little gap between the two populations. These were words of great hope and I have shared them more than once, encouraging people to strongly consider selecting a DMT with their doctor’s help, and sticking with it.

In discussion with various neurologists, I slowly began to see this picture wasn’t necessarily accurate.  Many of these numbers and ideas were shaped around the patients who were actively seen by doctors and did not include those who opt out of treatment or couldn’t afford to see a doctor.  Then there is another MS population  – the people who end up in long-term care facilities.  These people aren’t usually seen by neurologists and their care is handed over to other medical specialists. So much of the evidence to support this life span number was anecdotal and limited to a rather small population.

Now I am forced to look at those numbers and ideas again – a study released in December 2013, Survival in commercially insured multiple sclerosis patients and comparator subjects in the U.S. Kaufman et al., concludes that people with MS who have commercial insurance, live six fewer years than others.  This study came to my attention when I began seeing headlines in my newsfeeds such as ‘People with MS live Shorter Lives’ and ‘MS Life Expectancy Shorter.’

For this study the authors looked at a rather large sample  population from the United States  – over 30,000 MS patients, and almost 90,000 non-MS subjects, and compared death rates from 1996-2009. To be sure they were comparing apples-to-apples, they matched the study subjects by sex and the region of the country where they lived, and which insurance company provided their coverage. They used information found in the Social Security Administration Death Master File (SSA DMF) and the National Death Index, as well as the Optuminsight  Research (OIR) database, which contains the records of the commercial health insurance companies in the United States. The researchers go into the fine detail as to how these cohorts were found, matched and studied and you can read the entire article online if you want those facts.

This seems to be the first large-scale look at these records in the United States and yields much the same results as similar studies done in other countries.  Researchers in Europe and Canada most recently have looked at the life expectancy of people with MS being 6-8 years less, depending on which study you read, compared to the projected 6 year mark in the US. There seems to be a consensus with these studies on the difference of years between MS and non-MS populations.

In the midst of this sobering study there is encouraging news.  It turns out that much older studies found a larger deficit number of years in MS vs non-MS populations. A Danish MS registry cited a 10 year mortality difference, but their study was performed between 1949-1996; the majority of those years were before DMTs were available – that didn’t begin until 1993. Over a similar span of decades many other studies also found results mirroring those of the Danish study.  A study in Norway found an 8 year difference, Italian researches identified a ten year difference and another out of Austria cited 15 years for females and 11 years for males.

It has only been in the past decade or two that neurologists are able to treat MS early and aggressively with DMTs.  It is easy to draw the conclusion the availability of DMTs has shortened the disadvantage of life expectancy for those of us with MS.  Yes, living 6 years less is crappy news but it is a better number than 8 or 10 or 15 years.

The study raises many questions and perhaps other researchers will continue the thoughts, particularly helping us to understand the disadvantage people who don’t have commercial insurance face in life expectancy and chronic disease. The study does not look at mortality rates for people who have government insurance (Medicare or Medicaid or Tri-care) or no insurance at all.

Discussing our mortality is not simple to do, and it is even more complex when it involves acknowledging the deck is stacked against us due to having Multiple Sclerosis.  The discrepancy of years should be getting smaller and smaller over the next few decades as a greater percentage of people with MS will have had DMTs as part of their treatment for the entire time of their diagnosis.  Right now the numbers include people who may not have had any treatment at all, or had disease modifying  therapy available only a decade or so.  I hope to be around and see what the numbers look like in another decade or two, and how the wider use of DMTs affects the lifespan of us all.

Wishing you well,


This concludes the 153rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 3, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 1, 2014.

Wednesday, March 5, 2014

Using Storytelling to Influence Public Policy

Stories can identify shared values and help you connect with your audience, whether they be lawmaker, friend, peer group, colleague, family member, or stranger.  You can use your story to educate others about specific challenges or uncertainties you’ve experienced because of MS.  However, keep in mind that the best stories focus not only on heartbreak and despair, but also help answer the audience question - “What do you want me to do about it?”

In the case of office visits on Capitol Hill, you want to motivate lawmakers to support legislation and policies which improve the lives of those affected by MS.  Maybe you want increased funding for research or specific programs.  Or perhaps you want to inspire your representative to demonstrate a sign of solidarity with the MS community’s goals by joining the MS Congressional Caucus.

Be clear and concise in your storytelling.
Stories can identify shared values and help you connect with your audience, whether they be lawmaker, friend, peer group, colleague, family member, or stranger.  You can use your story to educate others about specific challenges or uncertainties you’ve experienced because of MS.  However, keep in mind that the best stories focus not only on heartbreak and despair, but also help answer the audience question - “What do you want me to do about it?” - See more at:

Read this post in its entirety:

MS Awareness Month 2014 and Telling Your Story