The Basics of Primary Progressive MS

Not all forms of MS are the same. The majority of patients who develop MS begin with a relapsing form of the disease that features acute neurological attacks and a waxing and waning of symptoms.

Approximately 10 to 15 percent of patients who develop MS have a progressive form of the disease from the beginning that features steady worsening of neurological function with occasional plateaus or minor improvements. A number of patients with relapsing-remitting MS (RRMS) go on to develop the secondary progressive MS (SPMS) form of the disease.

Primary progressive multiple sclerosis (PPMS) can be more challenging to diagnose and is definitely harder to treat than relapsing MS. Since PPMS doesn’t feature distinct clinical attacks like RRMS, the criteria for diagnosis is different. According to the National MS Society, the criteria for diagnosis of PPMS are:

1. One year of disease progression (worsening of neurological function without remission), AND
   
2. Two of the following:
   

• A type of lesion in the brain that is recognized by experts as being typical of MS
• Two or more lesions of a similar type in the spinal cord
• Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system   Fulfilling these diagnostic criteria may take years longer for PPMS than the equivalent does for RRMS.

Treatment for PPMS is limited.

Read this post in its entirety:
What is Primary Progressive Multiple Sclerosis?

High-Dose Biotin and Progressive MS

For years, research efforts into effective treatments for primary progressive multiple sclerosis (PPMS) have been frustrating. While we have 14 FDA-approved disease-modifying therapies (DMTs) for relapsing MS, there currently are no therapies approved for PPMS. Fortunately, it looks like a new therapy — ocrelizumab (Ocrevus), which is very similar to rituximab (Rituxan) — should be approved in December 2016 for the treatment of relapsing forms of MS and PPMS.

Research does not end there. On September 15, 2016, the International Progressive MS Alliance awarded €12.6 million ($13.7 million in U.S. dollars as of mid-October 2016) to fund three multi-year global projects to accelerate the pace of progressive MS research. Additionally, promising results from a small randomized double-blind placebo-controlled study of high-dose biotin (also known as MD1003) in the treatment of progressive MS were published in the Multiple Sclerosis Journal in September 2016.

What is biotin?

Biotin (or vitamin H) is a water-soluble B-complex vitamin that is found naturally in many foods. It acts as an essential coenzyme involved in energy metabolism and fatty acids synthesis. Data from a small open-label pilot study and the randomized trial referenced above suggest that high doses of biotin have some impact on disease progression and permanent disability in patients with progressive MS.

Read this post in its entirety:
High-dose Biotin as Treatment for Progressive Multiple Sclerosis

Carnival of MS Bloggers #162

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

Suffering Disappears, Love Remains

by Meagan at Multiple Sclerosis, Motherhood, and other Traumatic Experiences

Do you ever have days when you feel like it has all become too overwhelming?

My grandparents, both in uniform during WWII

My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?

This is a true story.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.

My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA

Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.

Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.

This beautiful love story began to take a turn.

My grandparents on their wedding day, 1945

That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.

Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.

My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.

My grandmother, mother, and aunt/uncles: 1960s

Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.

Here is the beautiful part of the story.

My grandmother with her caregiver

My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.

The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.

My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.

My grandparents...1980s

The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. 

On their grave is the quote "Suffering Disappears, Love Remains."

When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what is? Love.

My grandmother with Louis Armstrong, 1950s

With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I can and I will. 

When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.

MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.

Despite everything we endure in life, it is still "A Wonderful World," isn't it?

Please Join Me at iConquerMS™

by Lisa Emrich at Brass and Ivory

This concludes the 162nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 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, December 2, 2014.

Comments for this post.

Interview with Marc, Wheelchair Kamikaze (Part One)

Marc, you are known as "the Wheelchair Kamikaze." How would you describe the relationship you have with your wheelchair? Have you been able to dothings you might not otherwise be able to with the use of your chair?

Well, I'd say me and my wheelchair are very good friends. Like most people facing the prospect of getting a wheelchair, I was very wary of the whole proposition at first. I really resisted the whole idea for a while, but all the time my world was shrinking. I was able to walk less and less, but living in New York City, as long as you can get to a corner, you can always hail a cab. Unfortunately, my disease was progressing to the point where I couldn't even get to the corner. I had to undergo a long-running battle with my insurance company to get the wheelchair that I thought was right for me, because they had approved a wheelchair more suited for indoor and suburban use, whereas living in the city presents challenges best tackled by a more rugged machine. There are huge avenues to cross, the pavement is often in terrible shape, and numerous construction sites create some very haphazard pedestrian walkways. Also, I really wanted a chair that goes fast. I made the argument to the insurance company that this was because of the hazards of city living, but in reality I'm just a guy who always owned sports cars, and the thought of being stuck in a little putt putt chair was unacceptable. I finally got the insurance company to pay for a rugged chair with a high-speed package installed, so that I can go about 8.5 m/h, almost 3 times typical walking speed. The speed has actually turned out to be very handy, and I can get around the city much faster than most of my fellow New Yorkers, even if they hop on a bus.


Read this post in its entirety:

Wheelchair Kamikaze: Marc discuss Life in NYC, Progressive MS, Relationships, and CCSVI (Part One)

Interview with Mitch: PPMS and Enjoying the Ride

As a follower of several MS-related blogs, I get to know people through their stories and words online.  Doing so helps me to understand my own disease and to gain understanding of the different disease experiences of others.  It is truly cathartic.

This has also been great in learning about progressive forms of MS.  Talking to people who live it is more educational at times than reading the general information available online.  With that said, I’d like you to meet Mitch, a person living with primary progressive MS, who blogs at Enjoying the Ride.

Mitch, welcome to MS HealthCentral.  Please tell us a little bit about your MS diagnosis.  Had you had symptoms for years before seeing the doctor?  We are told that men generally delay seeking medical treatment.  What were your early symptoms?

Thank you so much for giving me the opportunity to talk about PPMS. I hope some people can benefit from my experience.

In the late winter of 2000, as I was jogging on my treadmill, I noticed a barely perceptible difference between my right foot and my left foot. My right foot quietly hit on the heel, and rolled to the toe as it is supposed to do while jogging. However, my left foot didn’t quietly go from heel to toe. It made a flapping sound. If I really concentrated I could make my left foot quietly go from heel to toe, heel to toe, but it didn't want to.


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Enjoying the Ride: Mitch talk about life, activism, advice, and living with Primary Progressive MS