Coming to terms with a new multiple sclerosis (MS) diagnosis can be tough. The lingering questions, anxiety, and feelings of isolation can be especially challenging. But remember: You have support and are not alone. The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States live with MS, with 200 new cases diagnosed each week.
To help provide some clarity and support, we asked members of our ‘Living with Multiple Sclerosis’ community group what advice they would give to someone just diagnosed with MS. Now, it should be noted that what works for one person may not be the best option for another. But sometimes, a little bit of support from strangers can make a world of difference.
“Take a deep breath. You can live a good life in spite of MS. Find a doctor that specializes in MS that you are comfortable with, and it may take more than one try. There is no miracle cure, no matter what the internet says. Get in touch with your local MS Society. And remember: Everyone’s MS is different. The medicines have different benefits and side effects. Something that works for someone else may not be right for you.”
“My best advice would be try to keep a good attitude! That’s not an easy thing to do when your health is on a steady decline, but a bad attitude doesn’t help you feel any better! Also, make life as simple as possible! The less stress you have, the better!! I’ve had responsibility overload the last few years and it’s taken a toll on my health for the worse. Simpler is better!!”
-Christa Wells Bacak
“Learn all you can, keep the faith, and hope.
I also suggest you keep a journal to track everything that happens, any new symptoms, any unexplained feelings so you can bring it the attention of your doctor! Also remember to always, always ask questions and don’t feel sorry for yourself!
Also remember to keep active, take your meds, and keep a positive attitude! I was diagnosed April 1, 1991 AND yes I was shocked, but I found a great doctor and together we are dealing with it! Hang in there!”
“Be positive and alert. Not every medical issue or symptom is from MS, so keep your doctors informed of all symptoms no matter how small. Also write everything on a calendar so you know how long you have been experiencing every issue.”
“It is overwhelming to read your diagnosis on paper and a lot to take in. The best advice I can give is to take one day at a time. Not every day will be a good day and that’s OK. It’s all new, all overwhelming, and knowledge really is power. Also, make sure to accept the help of others which is very difficult for me to do.”
“You’re likely going to get a lot of unwanted advice from friends, family, and others (eat this, drink that, sniff these, etc.). Smile, say thank you, and listen to your MS doctor.
Although well-intended, it can be overwhelming and not compassionate, especially at times when you need compassion the most. Find a group in your area or nearby and get plugged in. There are FB sites as well. Being around people who truly ‘get it’ can be a great encouragement, especially during those difficult times like relapses or poor health. Stay connected with those who know. That’s the best advice I can give you.”
“Education is power! Learn all you can about MS, make sure you contact your local chapter of the MS society, and join a support group. Take advantage of MS educators that work with pharmaceutical companies that make the disease-modifying drug you use and be medicine-compliant. Request family and friends to also educate themselves about MS and attend doctor appointments and support group meetings. And last but not least, ask for help if needed and don’t say no to those who want to help.”
“If I were newly diagnosed with MS today, I wouldn’t do anything very much differently from what I did almost exactly 24 years ago. But, today, I would have the great benefit of so much added research and information that wasn’t available when I was diagnosed back in 1993. So, I would suggest gathering as much information as possible from reputable places like the NMSS, nearby research hospitals, and MS clinics. And I would be sure to try to find a neurologist who specializes in MS, who I can communicate with.”
“When I was diagnosed in 2015, I knew nothing about the disease, so asking your doctor for information and googling it would be super beneficial for anyone. Staying ahead of your symptoms will help you function day to day. Letting your doctor know of any new symptom that you are having and even writing them down so at your appointment, you can let them know every detail.
Be strong, don’t let the definition of multiple sclerosis change your outlook on life and keep you from chasing your dreams. Having a great support system (family, friends, support group) is very important for times when you feel like giving up. Lastly, be active, take care of your body and hold on to your faith.”
“I was diagnosed 40 years ago in 1976. Accept your new normal and do what you can when you can! ‘It is what it is’ is my daily motto!”
-Karen Starcher Mullins
“1. Learn everything you can about MS.
2. Don’t feel sorry for yourself.
3. Don’t sit on a sofa and cry about it.
4. Stay positive.
5. Stay active.”
“The four biggest triggers for me are heat, stress, not eating, and sensory overload (like with shopping). Triggers are different for everyone. Try to journal whenever you have an episode: symptoms you got, what was happening while or before you got it. Most people get relapsing-remitting MS which means it comes in waves.”
“I was diagnosed with MS when I was 37 and I had three children. It started with optic neuritis like so many others. What I chose to do at that point made all the difference: I told my family and my friends. None of us really knew what it meant at that point.
At the same time, my husband and I started the first microbrewery in the Southwest, so between kids and a new business, I didn’t have much time to allow my disease to take over my life. Immediately, I went to the local office of the National MS Society and volunteered. While there, I not only learned about my disease, but I met numerous other MS people. As soon as I felt confident enough, I got on the board of my local MS chapter.
I’ve been on the boards of not only the MS Society, but the Master Brewers Association and the local Arboretum. I’ve also been a phone volunteer in the local MS office, a nonstop advocate writing letters to and meeting with local politicians, and I’m a current leader of an MS support group.
Now, 30 years later, I can look at my life and say I’m proud of who I am and what I’ve done.
Now the choice is yours. My advice to anyone newly diagnosed with MS is to live your life to the fullest! Accept your challenges, but don’t use your disease as an excuse for what you can’t do. Think of what you’ll be saying to yourself, and others who are newly diagnosed, 30 years from now!”
“When I was first diagnosed I had crippling migraines and seizures, that’s right seizures. While I only had 8 of them, they are really scary!
My advice to you is to live a day at a time. Find things that stimulate your mind. I like doing math. Exercise when you can. Set goals and find ways to achieve them. MS is going to teach you understanding and appreciation for what you have in life. It will stress appreciation of the small things, like being able to walk without assistance, remembering dates and times, having a day without pain, and holding in your bodily functions. MS will also teach you, if you allow it, to look at life in a totally different way.
You’re going to have hard times in your life ahead. Times that will stress your love of people, times that will stress your family and friendships. During these times give your love freely to everyone, grow into a person you’re proud to be.
Lastly, and I want to really stress this, be thankful for this disease. Thank those around you for their love, understanding, and help. Thank the doctors and nurses for all their help. Lastly, thank your Father in Heaven for this amazing view of the world you’re about to gain. Everything that happens to us is for our good, if we learn something from it.”
-James Justice, MBA