Newly Diagnosed with Multiple Sclerosis?

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People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

  • Stay open to ideas outside of mainstream information, but don’t believe everything you read online
  • Education is one of the most powerful tools you (and your caregivers) have
  • Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
  • Make sure your doctor is knowledgeable in treating MS
  • Keep all your medical records

Take care of yourself*:

  • It’s important to manage your overall health – physically and mentally
  • Eat plenty of fruits and vegetables (avoid junk food)
  • Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
  • Give yourself time to get the rest you need
  • Don’t stop taking medications just because you start feeling better
  • Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

  • Finding an MS buddy an be an enormous health
  • Work with associations and experts that can help you through the processes
  • Look to religion if it’s helpful for you
  • Keep a network of friends and family that can help you with even the simplest tasks when you need it
  • Keep your stress levels in check:
  • Try to keep stress levels as low as possible – stress can be your worst enemy with MS
  • For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

  • Know your limitations but find ways to continue enjoying life
  • Find something to be happy about every day
  • Remember that having MS is the “new normal” and be kind to yourself as you adjust
  • Take each day at a time
  • Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

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Comments

  • Kimberly says:

    I was diagnosed in 2012 with RRMS which was just upgraded to SPMS. My relapses I believe are when I walk too much I lean to the right and have to sit down and rest for a while and then I can go for a while more. Is this indeed a relapse? I know my body and I could feel things moving up from my legs so went to my neurologist and got the SPMS diagnosis. Can somebody tell me anything about this? Maybe what I have in store next? Thank you.

    • mweisser says:

      Thank you for reaching out to MSAA. I am sorry to hear about your current symptoms. Generally, acute physical symptoms or neurological signs from a relapse would need to last 24 to 48 hours and not be caused by heat, infection, or a fever to be considered a true relapse. Individuals can experience day to day fluctuations in their symptoms. If you are concerned about your current symptoms and how they are impacting you, I would suggest speaking with your neurologist. You can also contact MSAA at msquestions@mymsaa.org and visit our Relapse Center https://relapses.mymsaa.org/ to learn more about MS Relapses.

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