Tips For The Newly Diagnosed

What do you wish you knew when you were first diagnosed with MS? We asked our Facebook community what they would share with someone who has just been diagnosed. Below are a few of the comments we received (over 270 in total!):

Stay positive: 

  • Stay positive – You may have MS but it doesn’t have you
  • Pray and laugh, find something to smile about everyday!!
  • Know your limitations and live your life around them…but stay positive and live as normal a life as possible.
  • Be prepared for what may happen tomorrow but be hopeful that it won’t
  • Learn to enjoy life and rest when needed. Most of all, remember that this is the “new normal” and it takes some adjustments.
  • Take one day at a time
  • Take it in. Be mad. Be sad. Be scared. I think you need to go through those emotions. But then put that away and live. I call it “break down, break through”. There is no joy in living with fear.

Avoid heat/humidity and manage your stress levels: 

  • Do NOT put yourself into stressful situations; they will drain you of every ounce of energy that you may have
  • Two of your worst enemies will be heat & stress. Develop ways to relieve stress before it gets the better of you.
  • Go for walks at night, or really early in the morning during the summer.

Be your own advocate and do your research: 

  • Research outside of mainstream information – consider all options
  • Don’t believe everything you read online!
  • Advocate…advocate…advocate…and research everything you can. Education is the most powerful tool to someone living with MS, as well as the family/caretaker.
  • I highly recommend researching outside the mainstream information.

Take care of your overall health:

  • Leave junk food alone, exercise regularly, eat 5 servings of fruits and veggies
  • Take your meds… even when you feel great.
  • Keep moving your body, find exercises that are not too strenuous but help you stay strong and limber

Get Support:

  • Find a positive support system
  • Find an MS buddy! All the reading and research still cannot prepare you like only experience can. I don’t think I would last a week without my sister…
  • Call the National MS Society for resources.
  • Be honest with everyone about your issues, but only go as in-depth as you are comfortable to with.
  • Look to religion if it’s helpful for you

Find the right doctor and communicate openly: 

  • Be completely honest with your doctor about every symptom, even if it is embarrassing. He (or she) can’t help if he doesn’t know.
  • Find a doctor that treats your individual diagnosis specifically and is proactive (instead of reactive!).
  • Take notes to every doctor’s appointment with every symptom and/or random question listed, even if you think it is insignificant.
  • Find a good doctor that is knowledgeable with MS.
  • If you don’t feel like your doctor is listening to you or that your doctor isn’t a good fit find a new one. It’s important to have a doctor you can trust and respects you and your choices.
  • Keep track of all your medical records including medications and MRI results

What advice would you share? Please post in the comments! 

Comments

View Comments (7)
  • Carolina
    5 years ago

    My first attack (relapsing-remitting) was so bad that I couldn’t walk. 10 months later, I’ve gone gluten-free and no longer take my pain medicine and exercise regularly. Find the diet that works to help you, not simply feed you, and I definitely agree with the tip to tell your doctor EVERYTHING. It can be embarrassing, but your doctor will keep it between the two of you, and it will help diagnose/plan treatments. Good luck everyone!

  • Carolina
    5 years ago

    I mean that I am able to exercise regularly, not that I don’t haha 🙂

  • Joybo
    5 years ago

    I was diagnosed in the “old” days before MRI. Before DMD’s and before we knew what we know now! So in addition to being frightened (of blindness, being lame, or simply the unknown) I was approached by people who said things like, “Oh my aunt is in a nursing home with MS,” or “Wow, my cousin has been in a wheelchair since she was 20 from MS.” Before INTERNET and before YOU/US/WE could share and learn the truths, I didn’t know enough to realize everyone’s MS is different, from person to person and from day to day. “Fickle as shit” is how I refer to it.
    So (as a tip for the ‘newly diagnosed,’) DON’T go to a support group meeting and assume you’ll have the same problems or outcome as others you see. You may do better! You may do worse! FICKLE she is! DON’T listen to “people who know people who have MS…” if they just bring you negative comments.
    I have been SO LUCKY for 30+ years and even though now disabled, I am blessed to be ambulatory, have my (weird, double vision, unreliable) eyesight, and a beautiful cane as needed. Take ALL the good advice you read above, and this one last thing: MS is like a fingerprint: NO TWO ARE THE SAME. I wish you for you a benign, gentle and easy course. Take care of yourself and give thanks for all you are in ADDITION to an “MS” person. xoxoxo

  • Barbara
    5 years ago

    Outstanding! I agree with Tom — the Swank Diet is a great way to get started. I’ve had MS for over 20 years, and attribute much to how well I’m doing due to this diet.

  • Tim
    5 years ago

    Detox and start the Swank MS Diet.

  • Dee4Tim
    5 years ago

    New to this site. What is the Swank Diet?

  • Kim Dolce moderator
    5 years ago

    Excellent! That really covers it all.

    Kim

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