Multiple sclerosis and the National MS Society: A physician-turned-patient’s perspective

Tags: Lisa Doggett, multiple sclerosis, MS

By Lisa Doggett, MD, MPH

I woke up dizzy on a Monday morning in November, 11 years ago. I didn’t think much of it, and I went to work, as usual, at my small community clinic in Central Austin. But as the week wore on and my symptoms persisted, without any explanation, I began to worry. When I started to have mild diplopia and taste changes, I needed to seek care. A neurologist examined me and told me I was probably okay, but my dizziness continued. A few days later, after noting subtle nystagmus during my otherwise normal exam, a savvy ENT doctor ordered the MRI, revealing my diagnosis: multiple sclerosis.

I was lucky. Most people with MS wait months or even years before they are properly diagnosed. My diagnosis took eight days because, as a physician, I understood something was wrong, I knew the ENT doctor who fit me into his busy schedule, and I had the support and resources to get help fast. I worry when I think of others who can’t access the care they need. But as family physicians, we can help.

Multiple sclerosis is a chronic, autoimmune condition that damages myelin, the protective coating around neurons, and disrupts communication between the central nervous system and the rest of the body. The cause is unknown. Common symptoms include visual changes, fatigue, numbness, weakness, cognitive changes, bladder dysfunction, depression, and impaired mobility and coordination. While it can occur at any age, most people with MS are diagnosed between ages 20 and 50. More women are affected, with a female-to-male ratio of about 3 to 1. The presentation and symptoms, as well as the natural course of the disease, can differ considerably from person to person.

I’m embarrassed to admit, as a family doctor, MS never occurred to me as a diagnostic possibility in my own case. My husband, an internist/pediatrician didn’t suspect it either. Neither of us had seen more than a handful of MS patients in our years of practice, and we had never diagnosed anyone with MS.

Yet nearly a million people are living with multiple sclerosis in the United States. MS should have been on our radar. Because its presentation is so variable, and because most people with MS have the relapsing, remitting type and will get better between exacerbations, the diagnosis can be tricky. As primary care physicians, we should keep MS in mind as a possible cause when we see someone with unusual neurologic symptoms, and we should ask about past episodes that may indicate a suspicious pattern.

Three decades ago, MS was often a devastating diagnosis, leading to long-term disability with no good treatment options. Now, nearly two dozen disease modifying medications are FDA-approved to reduce the progression of MS and limit disability. Diagnosing MS and starting treatment early can significantly improve a patient’s prognosis and quality of life.

The National MS Society has been a critical driver behind MS research, advocating for support at the national and state levels and directly funding research studies. It also is an important resource for patients, their caregivers, and their physicians. In addition to providing solid, evidence-based educational information on their website, the NMSS can connect patients with MS specialists around the country.

The MS Navigator Program provides direct one-on-one support for people affected by MS including:

  • Information and education;
  • Emotional support;
  • Connecting with others with MS;
  • Navigating the complexities of the health care system: finding a neurologist, accessing benefits and medications, etc.;
  • Resources to address financial issues and plan for the future;
  • Wellness strategies; and
  • Assessment for case management.

There is no charge to participate, and the discussions and information shared are confidential.

Another helpful resource for physicians is Project ECHO, a guided practice model that increases workforce capacity of neurologists and other clinicians to provide best-practice specialty care for MS patients and reduce health disparities. Participants join an interactive video conference facilitated by one of three hub sites.

For me, in addition to reliable information, the NMSS has offered a community of fellow “MS Warriors” and supporters. It has empowered me to share my story, lobby at the State Capitol on behalf of the MS community, and join nearly 10,000 fellow cyclists to ride the MS 150, a 150-plus mile bike ride from Houston to Austin, twice!

Despite three relapses, I remain almost symptom-free with no discernable disability today, thanks to good medical care and effective treatment options. I work full time, exercise every day, and remain active in my community and with my family.

I encourage all my fellow family physicians to become familiar with the resources offered by the NMSS and to seek to improve identification and treatment of all people living with MS.  

2 Comments

  • John R Richmond MD said

    I appreciate you sharing your story with us and in the long run it makes us all better family doctors to keep MS on the radar. I have diagnosed one case alone over all the years and now wonder how many I missed but will do a better job to be more suspicious. Thank you. Many of us likely have stories to share like this one for I have severe hearing loss but also function at a high level with excellent and very expensive hearing aids for which I am so very thankful.

  • Robina Poonawala MD said

    Appreciate your candid commentary .
    Wishing you the best .

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