Multiple Sclerosis is an increasingly common condition, affecting more than 2 million people worldwide. However, experts believe the number to be much higher due to under-reporting and the difficulties associated with diagnosing the disease. Since there is no single test for MS, the diagnosis can be missed, delayed or even incorrect.
To gain a better understanding of the disease and gather some insights to share with you, we sat down with two people who are passionate about multiple sclerosis. First, we chatted with Nancy Davis, the founder of Race to Erase MS, a foundation dedicated to the treatment and ultimate cure for MS.
How long have you had multiple sclerosis?
I’ve had MS for 26 years now.
What type of MS do you have and how does it differ from the other types?
I have relapsing-remitting MS, which means that the symptoms come and go without leaving permanent disability. Eighty-five percent of MS patients have this type. There is also primary progressive MS and associated subsets where attacks can lead to sustained disabilities. Fifteen percent of the MS population have this type.
Did anyone else in your family or network have it when you were diagnosed, did you have a support network?
When I was diagnosed nobody else in my family had ever had MS. However, I have a younger sister who has had juvenile diabetes since she was seven, and four years ago she was also diagnosed with MS. There is a big correlation in families where one sibling has MS and one has diabetes.
Why is having a strong support network so important with this condition?
My biggest support network is my family, along with my best girlfriends who were there when I first got diagnosed. It really helps to feel you have someone who genuinely cares about you and encourages you to keep fighting and living healthy. More than anything, being a full-time mom to my kids means everything to me so I have no choice but to be as healthy as I can.
You’re the founder of Erase MS; why were you so passionate and vocal about the disease?
When I was diagnosed, the future for MS patients was not promising. I was told to go home and go to bed and that I would never walk again. They said the most I could look forward to was operating the remote control on my TV. I was in a bad marriage and knew if I wasn't there for my three boys, nobody would be.
I knew I needed to get second, third and fourth opinions, all the while hoping I would hear that I did not have MS. In listening to some of the best doctors, I was upset to learn they were all doing identical research and thought they were the only one doing it. This insight inspired me to start my own foundation - The Race To Erase MS.
I worked with the Center Without Walls, a unique group of the best neurologists and MS specialists working together as a team. All seven centers embraced the philosophy of collaboration and transparency and committed to communicating monthly to protect against duplicative research initiatives. This philosophy is why the work we do yields results. I'm passionate because I see so much suffering and am committed to finding a cure for MS.
Many of our readers may not know that Erase MS is a not-for-profit foundation that raises money for research. How is it going?
The Race To Erase MS has raised around $1.6 million to date. It's important that we raise money to fund important research so that we can erase MS off our planet once and for all.
What kind of treatments have you tried and what has worked the best?
I have always gone the homeopathic route. When I was diagnosed, there were no drugs on the market, and I needed to get better another way. Homeopathy has worked well for me. If I were diagnosed today, I would be on one of the 15 drugs that are now on the market.
A lot has changed since you were diagnosed, what do you think is the most interesting thing in the research area right now?
The new drug that got FDA approval on March 28 is called Ocrevus. It's a B-cell therapy suppressing your B cells so that they won't activate your T-Cells. You have an IV infusion twice per year, and it has minimal side effects. It's the first drug to get approval for Primary Progressive MS and works in 40% of cases. For those with relapsing-remitting MS it is 90% effective, which is miraculous!
Why is having a good relationship with your clinician important?
It's important to have a good relationship with your doctor because you need someone in your corner that you can trust. For me, having faith and confidence in my care team, and knowing they put me first was super important.
What advice would you give someone, and their family, when they get a new diagnosis of MS?
Families need to be understanding and supportive to an MS patient. It affects everybody in the family so everybody becomes part of this. Having a positive and knowledgeable support system increases your chances of fighting the disease.
Next, we chatted with Dr. Jessica R. Craddock, a neuroimmunologist with Providence Multiple Sclerosis Center in Spokane, Washington. We asked Dr. Craddock to shed some clinical insights to help people better understand multiple sclerosis.
Can you describe MS and its different types?
There are four types of diagnosis:
- Clinically Isolated Syndrome (CIS) is a single episode of neurological symptoms consistent with central nervous system demyelination (loss of myelin) but does not fully meet the criteria for Multiple Sclerosis. A proportion of these patients will go on to develop Multiple Sclerosis.
- Relapsing-remitting MS (RRMS) is the most common type. It is punctuated by episodes of new neurological symptoms that come on over a period of hours or days. Typically these new symptoms last for several days to several weeks and then begin to resolve. Often the symptoms do not resolve entirely and may accumulate over time.
- Primary Progressive MS (PPMS) is a less common form of MS that has a slower onset of symptoms with gradual progression year-after-year.
- Secondary Progressive MS (SPMS) typically follows the relapsing-remitting course, and is typified by the gradual progression of symptoms or disability without having clinical relapses or active inflammation found on MRI.
How common is MS?
According to the National MS Society, more than 2.3 million people are affected by MS worldwide. Estimates suggest that more than 400,000 of these patients are in the United States. And we know that it affects women at least two or three times more than men.
What is the primary cause?
At this point, we still do not know the cause of MS, and we believe MS is caused by a combination of factors. Those mainly include genetics, environment, and some trigger that sets the disease in motion. It is unknown if this trigger is common between people with MS or different for everyone.
What are the symptoms of Multiple Sclerosis?
MS is often difficult to diagnose as the symptoms vary and can be unpredictable. The National Institutes of Health provides a list of symptoms of multiple sclerosis that may include:
- Bladder-control problems
- Changes in the ability to concentrate or to multitask effectively
- Clumsiness and difficulty with balance when walking
- Difficulty in making decisions, planning or prioritizing at work or in private life
- Dizziness that will not go away
- Mental or physical fatigue
- Mood changes, such as depression or euphoria
- Tingling or numbness in the arms, legs, trunk or face
- Vision problems, such as blurred or double vision
- Weak, stiff muscles, often with painful muscle spasms.
Are you seeing progress in MS research and treatments?
Definitely. There has been an explosion in MS research and therapy options. Currently, the FDA has approved 15 medications to treat MS. There's a big push toward stem cell research to stop inﬂammation and the progression of MS as well as continued research on dietary or nutritional changes. Additionally, research is being done to try to reverse damage already accumulated. In 10 years, I think we will still be working on these items and discovering more about how MS is triggered, and how to best treat it.
What are the treatments?
Treatments are aimed at reducing the inflammation that contributes to demyelination and axon damage. Each medication works in different ways to either suppress or modulate the immune system. Medications offer significant benefits but also can pose risks of significant side effects. For this reason, each medication choice needs to be discussed between a patient and their neurologist to find what might be best for their disease.
Other than medications, there is more that goes into the management, such as physical and occupational therapy, supplements or involvement of other specialty physicians. With the multitude of treatment options, it is important to have a physician who understands the risks and benefits well and has experience using these therapies.
What’s your perspective about the latest FDA-approved drug found to slow the progress of MS?
This is a significant milestone in the treatment of Multiple Sclerosis. It is the first approved medication for the treatment of Primary Progressive MS as it has shown to slow disability progression. It has also been approved for treating Relapsing Remitting MS, and the trial data indicate significant reductions in new lesions on MRI, clinical relapses, and disability progression.
Still, it is not a cure and does not reverse the damage that has already been accumulated. With this in mind, it is not a medication for everyone and patients would need to discuss the risks and benefits with their neurologist. The new drug, however, is still exciting and is a great example of the strides we are making in MS therapies.
Can you tell us about ongoing research?
We're focused on clinical trials to improve our knowledge of MS both in the disease itself and in treatments to better help our patients. Better treatments and even cures for disease always start with research. In fact, we're enrolling patients in a research registry now. It's called the Passage Study. The data we collect will help people understand side eﬀects of certain medications and help us understand how some people respond. We are planning to add more studies soon.
What is the outlook for people with MS?
We see a diﬀerence in how medications are aﬀecting the disease just by looking out into the waiting rooms. There used to be more walkers and wheelchairs. I believe part of this is due to diagnosing and treating MS earlier and more aggressively. I always try to instill in my new patients that being diagnosed with MS does not come with a bleak ending. We can change the disease and do something about it, even though there is currently no cure.
To learn more about Multiple Sclerosis, visit these sites:
Providence St. Joseph would like to thank Nancy for being a paid partner with us on this important topic.
Providence is pleased to share the stories of great people who have overcome health conditions. As part of our population health program, we want to share insights and stories that help bring awareness to common health conditions. Not all the people featured in our stories are Providence patients.