Q & A - MS LifeLines® Ambassador Christy
- Q: What types of symptoms led you to see your doctor and ultimately be diagnosed with relapsing MS?
The very first MS symptom I remember having was double vision, but my eye doctor did not suspect MS. Then 18 months later, my balance was off for a couple days, and then I got very sick. So I went to see a doctor. He thought I had an inner ear infection and sent me home with some medication to help with the vertigo. But when the medication didn't work and I lost feeling on the right side of my face, I went to see an ear, nose and throat specialist. He ordered an MRI, and then he sent me to a neurologist to analyze the results.
- Q: What is the best piece of advice that you've received to help you with your relapsing MS?
The best piece of advice would have to be the importance of staying on therapy as directed by my doctor. While taking Rebif, I have definitely had those times when I just wanted to quit because I was so tired of taking an injection. But, when I remind myself how insignificant my MS is to me in my daily routine, then the injections seem insignificant as well.
This may sound silly, but the second most important piece of advice would be to learn how to say no—I had to learn how to not over-commit myself. When I'm over-committed, I find it hard to exercise, eat right, relax, manage stress, etc.
- Q: Did you experience any flu-like symptoms or injection-site reactions? If so, were there any specific tips that you found helpful in managing these side effects?
When I started Rebif, I experienced some flu-like symptoms. I would run a slight fever and feel achy and lethargic. I was instructed by my doctor to take an over-the-counter analgesic an hour before my injection, and to adjust my injection time closer to bedtime so I could sleep through some of the symptoms. I found this to be very helpful with flu-like symptoms, and I never considered them to be a problem since I never had to miss work or any other activity because of them. The flu-like symptoms for me were worse in the beginning and lessened over time. Today, although I no longer experience the achiness, I still experience a mild fever, but I don't feel bad enough to take the analgesic. I will occasionally experience a red spot at the injection site. The red spots are unpredictable—sometimes I get them and sometimes I don't. I always clean the injection site and massage the area after giving the injection. When it comes to injection time, I place the syringe under my arm to help warm it up while I brush my teeth, get my alcohol swab and prepare the injection site. These steps seem to lessen the discomfort for me when I take my Rebif.
These tips have been recommended by some health care professionals. Talk to your doctor to find out what's best for you.
Rebif should be stored in a refrigerator. If a refrigerator is not available, Rebif may be stored at or below room temperature (25°C/77°F) for up to 30 days away from heat and light. Rebif syringes should never be warmed in the microwave or placed in boiling water.
Potential serious side effects of Rebif include depression and risk of suicide, liver problems, risk to pregnancy, injection-site problems, and severe allergic reactions. Allergic reactions are rare and may be associated with difficulty in breathing and loss of consciousness, which require immediate medical attention.
Please see important safety information below and the Rebif Medication Guide and Prescribing Information in the top of this website, and speak with your doctor for more information.
- Q: How have your relationships with your family and your friends changed since the diagnosis of relapsing MS?
My diagnosis of relapsing MS has improved my family relationships and brought new friends into my life. At the time of my diagnosis, I was a flat-out workaholic and had very few friends outside of work. The diagnosis has helped me put work in perspective and appreciate the importance of family and friends. I still work very hard and take pride in what I do, but I have learned to slow down, relax and enjoy my relationships. Before MS, my identity was wrapped up in my work and my achievements. MS has taught me to love me for who I am. That in turn has allowed me to be more accepting and generous towards others. I married my soul mate 9 months after being diagnosed. He has made me realize the value and reward of a deep relationship and has made me such a better person.
- Q: Dealing with relapsing MS means finding new ways to do familiar things. How have you and the people in your life been able to accommodate your day-to-day needs and routine?
I am fortunate that I am able to take care of my day-to-day needs without much accommodation. There are 2 main areas, however, where I have had to work out some accommodations. The first area is managing heat. We live in the south at the beach. It gets very hot and humid sometimes, but I love to be outside. One thing my husband has done is set up a drip system for all my potted plants and flower beds, so I don't have to physically water them myself every day. I still feel like I take care of them, yet I no longer have the added burden of watering every day. When it comes to exercise, I don't exercise outside in the summer. Instead, I have an elliptical machine in the house, and I place 2 fans on each side of me to keep me cool.
The other area is an accommodation for my cognitive issues—I have a hard time concentrating and lose my focus very quickly. One of my major challenges with this was to make sure I paid all my bills on time. I set it up so that all of my regular monthly bills are due on the same day, and I only have to sit down once a month and pay them all at the same time. I also do as much online as possible, where I can schedule the payments ahead of time.
- Q: What advice would you give others who have been recently diagnosed with relapsing MS?
To those who are newly diagnosed with relapsing MS, I would first say work with your doctor to start on a DMD therapy as soon as possible, and commit to it. You can't necessarily "see" or "feel" the effects that show your therapy is working, but a DMD is an effective weapon in treating your relapsing MS.
Second, I would implore you to keep doing what you love to do and to keep setting new and exciting goals for yourself.
Finally, I would encourage you to set priorities, and then stick to them. For me, I needed help learning to say 'no.' Now, I regularly evaluate my commitments and choose 2 or 3 things that are most important to me.
This story reflects the personal experience of one person. Results and experiences vary from patient to patient. It is best to contact your doctor to discuss what's best for you. Christy is an MS LifeLines Ambassador, and she has chosen to share her story with other people living with MS.