WHAT WOULD I TELL NEWLY DIAGNOSED PEOPLE ABOUT MS?

Asked by @lyssjo on my last list. I thought it needed a separate one.
  1. Your emotions are real
    It's OK to be scared. It's OK to be sad or depressed. It's OK to be angry and to shake your fist at God. Your emotions are real and valid. Do not minimize your reality and experience because someone else "has it worse off." Your reality is your own, and 100% valid.
  2. Remember that MS is NOT a terminal illness
    Your life expectancy is only a few years shorter than someone without MS. People do not die from MS, they die from complications. Complications can be managed or avoided.
  3. Do your research
    In this case, Google IS NOT your friend. Who are your friends? Your healthcare team or the MS Society.
  4. MS is highly variable
    I have had patients who had MS for 40 years and you would never know, in patients who have had MS for five years and are in wheelchairs and nursing homes. You cannot predict.
  5. See a physical therapist and occupational therapist right away, and at least once a year.
    This establishes your care with them. See those exact therapists at least once a year and as needed, so they are able to monitor your progress and notice minor changes. That way, they can intervene with therapies as early as possible and help you manage your disease.
  6. Listen to your body
    Regarding the heat, fatigue, and weakness. At the same time, YOU are the boss, not your body.