Living and loving with multiple sclerosis

Carol Sarnowski, our guest blogger, patient and MS advocate, was diagnosed with multiple sclerosis 21 years ago. Here is her story.


My MS diagnosis came as a complete surprise.

I had finished nursing school and was at the prime of my life when the migraine headache I had been fighting for months to treat got more intense and I woke up completely numb on my left side one morning.

I went to my long time family doctor, JohnFB_IMG_1454974696594ny Bill Delashaw, Sr., in Longview, Wash., who was also a long time family friend. Of course, with my nursing knowledge, I was convinced I had a brain tumor and insisted on having a MRI.

Dr. Delashaw told me not to self diagnose, but ordered the MRI even though he disagreed with my self-diagnosis.

I had the MRI on Friday and on Monday, his office called telling me he wanted to see me. I went in and he explained he took my MRI films down to his son, Johnny Bill, Jr., a neurosurgeon at OHSU.

I was then referred to the OHSU Multiple Sclerosis Center, where my diagnosis was confirmed after a spinal MRI and a lumbar puncture.

This diagnosis was a surprise to me, my family, my friends and my doctor.

My migraines lasted 121 days and didn’t improve until weeks after an intense course of IV steroid therapy. I then started the only drug on the market for MS, Betaseron. I was very sick and thought my life and dreams were over.

Being single, I wasn’t sure if I would ever find a person who would want to marry me or if I would be able to have a family. I decided that I couldn’t help it — I had MS and I wasn’t going to let it hold me back from my dreams. I just knew I had to be open about my diagnosis and educate others the best I could.

I began dating Ken, my husband, in January 2000. I remember telling him about my MS on our first date and giving him the opportunity to bow out. He didn’t let the MS scare him away even though he had a friend who was pretty debilitated by MS.

I explained to him I had the best MS doctor —Dr. Ruth Whitham at OHSU— who had me on the newest MS drug at that time, Avonex.

We continued dating and were married in June of 2003.

Thanks to Dr. Whitham’s great care and knowledge, my MS stabilized. In October, 2003, she gave us the OK to try to get pregnant. She thought it could take awhile and instructed me on how to go off of my MS drug and try to conceive.

By December, I found out I was pregnant. It was a shock to all of us as it happened so soon. My pregnancy went great, even though I was off of my MS medication, and I delivered a healthy baby girl, Claire.

I have never hidden my MS from Claire. She went to appointments with me, saw me do my injections, accompanied me to MS meetings for the Patient Advisory Board I served on for Biogen, and participated in yearly MS Walks as I pushed her in her stroller.

I believe being open about my MS in all aspects of my life has helped me cope and succeed at living my life as close to normal as possible.

Claire’s early exposure to MS has made her my biggest advocate and my best medicine.

Claire is a Top Fundraiser for the National MS Society’s Portland MS Walk. I know I wouldn’t have the life I have today — or even my daughter — had it not been for the wonderful care I had from Dr. Whitham and OHSU.

I am forever grateful. After 21 years, Dr. Whitham is just not my doctor, she is also my friend.

Want to learn more from 11-year-old Claire? Read her side of the story here.