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Multiple Sclerosis: My Story

I gave the keynote address at the BP MS150 Austin celebration.

I was honored this evening to deliver the keynote address for the BP MS150 Austin celebration. I have written my story, but I haven't often spoken about it, so this was a fairly new experience for me. Here is my story as I told it today to MS150 cyclists, volunteers, and supporters:

 

I woke up on November 2, 2009 with dizziness. I remember the exact date because it was two days before my daughter Clara's second birthday. I thought I was getting a cold, and I tried to ignore it all week. I'm a family doctor, and I tried to keep up my usual schedule seeing patients and teaching students who rotated through my clinic. I tried to take care of my kids, Ella and Clara. They were two and four – not exactly independent.

 

The dizziness was constant. Nothing made it better or worse. I kept expecting it to turn into a respiratory infection or the flu, but instead I started getting other weird symptoms like double vision and taste changes. Like a lot of people with undiagnosed MS, I thought I must have a brain tumor. Even as a doctor, I couldn't come up with any other diagnosis to explain my symptoms.

 

When I got an MRI that was highly suspicious for MS, I was shocked. I was 36 years old. I was a health nut, a vegetarian. I exercised every day. I shopped at Whole Foods. I had no family history of MS or other autoimmune diseases.

 

And I remembered the first person I had met with MS. When I was a medical student in the mid 1990s, I met a man with progressive MS who was admitted by my team to the hospital with an intestinal obstruction. He was in excruciating pain, and severely debilitated – rigid, unable to work, and barely able to move. He must have required near constant nursing care, even before he came to the hospital.

 

I realized that I could end up like my patient. And after I got a spinal tap, which confirmed my diagnosis, that's exactly what I thought was going to happen. Two days after my spinal tap, when I thought I was supposed to be recovering, I got so sick I couldn't get out of bed. I still had bad dizziness and the other symptoms, but I also started vomiting. I was weak, exhausted, and so so depressed. I had a supportive family, and health insurance – the means to get good care. Yet I felt like my future had just been stolen from me or obscured by an ominous dark cloud.

 

An MS diagnosis can be devastating – physically, financially, emotionally. It often strikes people who are young and healthy. It doesn't discriminate.  Its course is unpredictable and random. It's a bizarre disease and that still a leading cause of disability in young adults. Overcoming my symptoms and learning to live with the uncertainty that MS created has been one of the biggest challenges of my life.

 

Yet I was able to confront those challenges and go on to lead a pretty great life because of people like you. Just a few decades ago, there was no treatment for MS. The prevailing sentiment among neurologists was "Diagnose and Adios" – make the diagnosis of MS and then say good-bye because nothing more could be done.  In the last 20 years or so, the advances in treatment for MS have been astounding. Now we have more than a dozen medicines that reduce the progression of MS.

 

The National MS Society has championed and helped fund that research. They also provide services and support for people with MS and advocate for public policies to improve access to care. They are able to do that – and I am able to stand here today – because of people like you. Your participation in the MS 150 is an incredibly important way to raise awareness and funds for MS.

 

We still have a long way to go. An estimated 2.3 million people live with MS worldwide – many of them suffer terrible disability, fatigue, and pain. But your participation in activities like the MS150 helps dramatically reduce the frequency that those of us with MS end up like my patient back in the mid-90s before treatments were available. It helps provide support for MS Warriors who don't have a strong support circle, who don't have health insurance. And it means that when I have another relapse, there will be another medicine for me to turn to.

 

I was able to ride the MS 150 for the first time in April as a proud member of Team Taco Deli. It was such an empowering experience – truly a highlight of my year. I loved the festive atmosphere, the people along the way who came out to cheer us on, the well-organized rest stops with the buckets of every snack you could think of. I was especially excited to be surrounded by a community of people who shared my love of the outdoors and were helping to support those of us with MS, helping to fund research that will one day lead us to a cure.

 

I never thought, when I was lying in bed after that spinal tap that I would ever be able to ride 168 miles from Houston to Austin. I also didn't think I would be able to continue my work as a family doctor. I didn't think I could raise my daughters – who are now 10 and 13 – with my husband and partner Don. All of them are here with me now, and I wouldn't be here today without them. I didn't think I would be able to write a memoir about my experience, called White Spots and Black Holes which are common findings on a brain MRI when someone has MS. But I've been able to do all that and more because of the support of people like you. Thank you for being here, and I hope to see you on the road again next April.

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