Community Views: Tips for the Newly Diagnosed
Last updated: May 2023
What do you wish you knew when you were first diagnosed with multiple sclerosis (MS)? We asked the MultipleSclerosis.net Facebook community what they would share with someone who has just been diagnosed.
We received over 270 comments! Here is some of the advice the community gave.
"Stay positive – You may have MS but it doesn’t have you."
"Pray and laugh, find something to smile about every day!!"
"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 and 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."
"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. They can't help if they don'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 is a good fit, find a new one. It's important to have a doctor you can trust and respects you and your choices."
What advice would you share? Please post in the comments!
Do you ever have moments where you question your self worth because of your MS?