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Help from people living with Multiple Sclerosis

I asked people living with Multiple Sclerosis to share a piece of advice that they feel would benefit those newly diagnosed with MS. The response was overwhelming and very informative. I put together a list of their answers and hope it will encourage even those who have been living with MS for years.

If you are newly diagnosed, know that you are not alone. If you have been living with MS for years, sometimes reading a list like this will encourage you and help you to shift your focus back to things that are truly important in life.

The most recurring advice from people living with MS
  • Stay calm, you are not alone.
  • Stay positive. You will have good days and bad days.
  • Surround yourself with positive people.
  • Laugh.
  • Exercise.
  • Keep moving.
  • Fight, fight, fight.
  • Have faith.
  • Take one day at a time.
  • Don’t panic.
  • Love yourself.
  • Keep living.
  • Be your own advocate.
  • It’s not the end of the world.
  • Life goes on.
  • Listen to your body.
  • No matter how hard it is, DON’T QUIT.
  • Breathe.
More great advice, information and help from some amazing MSers

Not everyone’s MS is the same. What course of treatment works for me, for your cousin’s best friend’s boyfriend’s grandma, or your neighbor may NOT work for you. – Erin

Kick people who tell you about someone they know with MS climbing Everest or cycling around the world. Oh, and get the old person attitude of saying what you think. – Leigh

You are the same person you were before you were diagnosed. Don’t give up. Your life is not over! – Cheryl

Don’t start the meds the next day. Investigate, talk to others who use the meds, read up on them, join MS groups, get a couple of 2nd opinions, find a neurologist who knows about MS (not all do). Do some investigating on your own. – Melissa

Let go of the stress…including friends and family that drag you down. And be happy. It’s a new life direction and it’s okay. – Vonn

It’s time to take exceptional care of yourself in EVERY way because you are sick and need it. And your life will thank you for it. Don’t listen to the horror stories, just live it up and REFUSE to LOSE. Rest when you really need to but not so much you forget how to walk. Practice walking every day so your brain always remembers how. – Chelle

Be who you are and not a diagnosis. – Chris

Be positive, it isn’t the end. It is the beginning of a new chapter in your life. It ain’t all bad, just a test you will learn to endure. – Tony

Find the happiness, there is a silver lining to everything. Take the time to look inwards to develop the ability to laugh at everything. We are on this earth for however long…enjoy it. – Gary

Be smart with your health right off the bat. Make the changes now, not later. – Krysten

You know that song by Time McGraw, Live Like You Were Dying? Listen to that. Then pick yourself up and give it your best shot. – John

Drink lots of wine. :))) – Aistė

It’s not a death sentence, just a hurdle in life. Life goes on and you are the one who decides how you are going to live it. – Tina

It does get easier. In the beginning you’re just so overwhelmed. You learn your limits and drugs / therapies that help. It just takes time. – Lindsey

Don’t tell everyone right away, just those closest to you. I made that mistake. I spent most of my time trying to help everyone else through my diagnosis. People created so much drama and negativity. I wish i would have waited until I was more adjusted myself. – Cindy

Live large…do not put off hiking, adventures, etc. – Jill

Don’t wake up looking for your MS symptoms. Get on with your day just being you and live your life. Be prepared to rest and alter your day if your MS decides to appear. Sometimes it does good to slow down and “remember to smell the roses.” – Jacki

Relax…as impossible as it seems, just take one minute at a time at first. Relax and just do day by day. No expectations or conceptions, just go with it. Ride it for a while. See how it feels until you get your feet back under you. – Susanne

Just because they are doctors that specialize in MS doesn’t mean they walk with it. Research the things they tell you that sound off or weird. Get 2nd opinions. If your gut says no, then it’s probably a no. – Chula

You are allowed to fall apart…for a little while. Then get back up, smile and get on with it. – Odette

The journey has a lot to do with you…your attitude, discipline, diet, exercise, supplements. The best doctor is Dr. You! – Vince

Hold on, it’s a bumpy ride. – Shari

Know that your MS is unique to you and you only. Don’t get scared if you know of someone with a hard hitting, rapid progressing form of the disease because that doesn’t mean it will happen to you. Listen to your body and do what makes you feel better, and never underestimate the power of exercise, healthy diet, rest and laughter. – Danielle

Say hello to the new you. Never compare yourself to who you have been. – Sara

Never let anyone, especially yourself, make you believe that your symptoms are not real, or not that sever. They are real, own it, accept it, learn from it, and learn how to be happy around those limitations. No matter how many comparisons people make, remind them (and yourself too) that they are irrelevant to your issues. Your MS symptoms are just as valid as anyone else’s medical issues. You have value, and the hardest work you can do is making sure you believe that. When MS symptoms hit…and they can hit like a truck, you are valued. You are valued in those who love you, those who treat you like a person, and most importantly, you are valued by yourself. The most important person to be valued by. – Rich

Always remember you know your body better than anyone else. Every day could and may be different, but try your hardest to live in the moment. – Nicole

Stay away from non-therapeutic people. Have faith, miracles happen. – Karolyn

Get YOUR GAME FACE on! – Jyme

We all have bad days, but make sure you limit them. Set a limit. After 2 days, force yourself out of bed, shower, get dressed, and go out in the real world. – Loretta

The fear fades. Life moves forward. Don’t rush it, it’ll happen. – Amanda

Someone will love you for you…be patient. – Steph

If your body says it’s tired, rest! I used to think I was Wonder Woman and had to do everything in one day. My philosophy is that it will be there tomorrow. It’s not an easy journey, but you got this. I am a firm believer that if He (God) brought you to it, He will bring you through it. – Cathy

Pace yourself and only do what you can comfortably do without tiring yourself out. Learn to accept help, even if they fold the towels differently than you. Some things are more important than a pristinely clean house. Live and enjoy your family. – Nana

Only read stuff online from reliable sources. I over read and freaked out. – Netty

The worst scenario you have in your head may not be your destiny. Take it one day at a time. There are scientists working on this, and I think there’s light at the end of the tunnel. Keep pushing on. – Jennifer

Life as you know it will be different…not dead or gone…just different. So choose to make decisions of how to live you life in your own way now and get used to working at your own pace and not what others expect of you. Learn to be selfish and live life doing what you love because the last thing you need is stress – Melissa

SUPPORT of friends and family are IT! You will need it to get through relapses and tough appointments. – Nyssa

Do your best to get back to the place where you found the world beautiful. Your best ally in this fight is a good attitude! – Scotty

Everyone lives with things everyday: cancer, back pain, chronic migraines, etc. and that’s exactly what you do with it…LIVE!!! – Dana

Pray lots. Pam

…When you find that you can’t do the things you like to do because your MS won’t let you, be creative and find other ways to make it easier to do those things. Find a new hobby that your MS will allow you to do and don’t be afraid to ask for help from someone. Allow yourself to have more time to get things done. I like to have supper at 5:00. I would start at 4:00 and have no problem, now I prepare everything ahead of time like cutting up my onions, peppers or any thing else that can be done early. Just learn to adjust your routine with your MS so that you can still feel like you are on task. Give yourself extra time to get to where you have to go. Leave earlier then you would normally leave so you don’t feel rushed. Do the things you love but in a different way. – Karline

Promise yourself every day that you will love yourself enough to ask for help when needed, give help to others like you and, understand you never have to go through this alone. We are all listening and waiting to help you too. – Deborah

This episode will improve, but your health will now be unpredictable and never the same again, so make the most of life when you’re feeling good and be prepared for set backs. – Stephanie

It’s ok to know your limits and say no to things you would otherwise do…Your body will appreciate the rest. – Lindsey

You have not changed who you are. You know what is going on in your life better than any one else, so take care of yourself and don’t listen to everyone who has something to say about what you should or should not be doing to make YOU Better. They are not Living with MS and are not you. – Lydia

Learn to laugh at yourself, because the world is going to laugh. BE KIND TO YOURSELF: allow yourself to have those days when you don’t belong on a ladder to change a light bulb and perhaps shouldn’t leave the house unescorted! – Kathy

You are always gonna be YOU, never lose sight of that. – Evie

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About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

37 replies
  1. Kathleen Reardon says:

    My Mom had Polio as a child. She was part of the generation that beat it . Us in our 60’s & 70’s remember lining up @ schools & fire stations for mass vaccinations as children . We got this MSers ! 2017 promises clinical study breakthroughs . Remember everyday is a gift. ❤️

  2. Samantha J Brown says:

    Take advantage of the “good” days and enjoy some adventures. Try to build a community of friends and family so you do not become isolated. Still working on this myself. Rest when you need to or you might have a relapse-do not be afraid to say “no” to things. True friends will understand. Consider osteopathic PT, acupuncture, vitamin D, diet changes, and electrical stimulation for weak muscles. Lots of wonderful articles on all of these things. Best wishes-you are strong and you can do it!

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Some really good advice from some good people.We have to live our lives as best we can and don’t let MS stop you.

  4. Ian Balsdon says:

    It’s 12 years now with Multiple Sclerosis and all I seem to get these days and bad days it killed my career my fiance left me in May after eight years depressing

    • Sue Ashton
      Sue Ashton says:

      So sorry you’ve been let down by career and love. They obviously we not right for you. Try to be patient, life will get better. Appreciate every little good thing and the little things will become big things. Good luck. I’ve had MS for 20 years this year! My anniversary!

    • Sue Ashton
      Sue Ashton says:

      Hi there. 11 months is not long. Be kind and patient with yourself. It takes time to come to terms with it as it is such an unreliable condition! Good luck with living with the new you XX

    • Debbie
      Debbie says:

      Hi Felicity, I Was diagnosed with MS in1978. I was 18 and not very educated on MS. I was referred to a well known neurologist and he told me I would never have children, further my education, or really anything positive. He did say that any day they would find a cure. Well, guess what? No cure, but been married for 37 years, have three children, four grandchildren, and worked as a third grade teacher for 25 years. Oh, I also finished school – Master degree in Education. So, this long story is to tell you-don’t rush into anything, talk to more than one doctor about any type of medication, don’t be afraid, go for your dreams and keep positive.

  5. Tracey Manley says:

    Do what you want to do listen to advise but choose what you want to do don’t feel pressured about starting medication it’s your body and up to u what you put into it

  6. Sandra Mello says:

    You are not alone, I was diagnosed in 2002 and only now, I have more problems. Something I can handle. I say to myself many times, some people have it worse than us, whether other MSERS or people living with incurable diseases, like cancer, etc.

  7. Ethel Himel says:

    It took 2 nuroligist and MRI of the head and spine and lumbar puncture and a lot of other test prevoked potential was one don’t kno them all and a whole year of this to get sent to MS specialist before I was dx with MS. And every one is different, what works for some, won’t work for others. I listen to my dr and the nurse from Shared is a hard dx for the dr to make.I hated to hear the dx but it’s like closure. Now I kno what I have and do the best I can do and take the medicine and I pray a lot for the strength I need. Good luck to all MS warriors May God Bless us all

  8. Larriza Burns says:

    Life doesn’t suck, MS sucks.
    Don’t change who you are, change how you do things.
    Don’t listen to anyone who has the cure, listen to yourself and your doctor’s and nurses.

  9. Sonia Flores says:

    You are afraid now, but not for long. Learn, ask, explore, keep being your fabulous self. MS can be hard but you are strong, can beat you at times but you will prevail.
    You just entered a warriors world.
    MS Warriors!

  10. Debbie
    Debbie says:

    I was diagnosed in 2009. I learned that it is important to remember not to talk about JUST myself and my MS symptoms, difficulties, treatments, and … on and on … with my family and friends. No matter how much everyone loves me, there has to be more to my life and I can’t expect MS and me to be all I care about. I need to talk about other things and not become self-absorbed; everyone has “something” in their life and I need to think about them as well.

  11. Dan Pimenta says:

    I have had MS for 25 years,I was on Betaseron For 23 years and it worked for me!! I’m 52 and stopped taking it when I turned 50 feel great and still working as a full-time firefighter in Massachusetts Good luck stay strong you can manage MS

  12. Treasa G Frazer says:

    Can anyone answer me how many brain lesions is a person to have to get diagnosed? I’m 5 years and waiting with still no diagnosis even though my neurologist thinks I have it..I have symptoms but they come and go and I have only minimal amount of lesions in my brain that’s too low apparently to make a diagnosis yet.. on a positive note though, for 7 months of my recent pregnancy, I have been completely symptom free and they are very slowly returning but not as bad as before

  13. Julia-Anne Dixon says:

    – your disease is yours, it will be different, not everyone with MS has the same issues.
    – Its ok to take time for yourself.
    – there is no magic cure, no matter how many friends tell you they have found a magic pill, drink, exercise, etc.

  14. Leslie Beaver says:

    Patience. With others of course but with yourself most of all. As things have changed. You must be honest with yourself and adjust. And readjust as events demand. As a failure to do so is self defeating. And can only hurt you and your loved ones.

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