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What's your MS story?

How many years have you been living with MS? Which type of MS do you have? How has your life changed since diagnosis?

  1. I have had MS for 40+ years. I have been blessed with 2marriages and one daughter. My career as a nurse spanned over 35 years before I went on disability. I got to be a semiprofessional clown for 3 years. I am presently 70 years old. Can not drive and have help during the week. I still walk with a walker and do my own ADLs. MS ran in my family. Both my Mom and sister died with MS. Again I am blessed.

    1. Wow a nurse and a clown! So impressive and fun 😀 I'm happy to hear you have some assistance during the week, I'm sure that helps take some of the household responsibilities off of your shoulders! I'm so sorry to hear about your mom and your sister. It must have been very difficult to watch their MS struggles and ultimately lose them. It sounds like you have a positive outlook and a good support system. We are here to support you in any way you need! Take care!
      - Kelsey,

  2. I have PPMS and now in a wheelchair and in a care Facility. I have put up with mess since September 1999

    1. - Yes, that's quite a bit of time living with MS. Were you diagnosed with PPMS originally or did your diagnosis change over time? We understand the emotional and physical toll MS must have and we are here to support you. I hope you're able to find things that bring you joy and happiness. Wishing you the best!
      - Kelsey, team member

    2. thanks for the reply and yes my original neuro said that I have PPMS and I said what is that? Now I can tell him he was right ad what MS is like.

  3. I have lived with MS unknowingly for 24 years before an official diagnosis. Overall life with MS a fun 36 years and currently with PPMS.

    Before being diagnosed with MS, I was mostly focused on work and on being successful. It did not matter how much time, focus, or energy it took. My goal was being the best I could be.

    MS has refocused my vision of life. I wake each day to enjoy the simple things in life I had previously missed along the way.

    A morning sunrise or sunset, for example, is filled with vibrant and ever-changing colors. Seasonal variations from spring to summer, fall, and then winter change the landscape and have their unique beauty.

    I spend my time visiting new places and standing silently to take in people, architecture, sounds, and the simple progression of life.

    Staying positive is not always easy, but I have found that taking an internal inventory of what is good in life forces me to focus on the good: family, good friends, a place to live, food on the table, helping others, and waking up every day.

    Wishing you all the very best

    1. MikeRussell, The saying to look for the good is my way as well. Bless you and keep on keeping on. We all do.

    2. I appreciate how positively you face MS. I also try to be positive. I was diagnosed in 2000, but like you I had symptoms for many years previous to the official diagnosis. I've found that things only get worse if my reaction is negative.
      Keep looking up. May the Lord continue to bless you.

  4. I was diagnosed about 8 years ago. I have RRMS. And it is mild for the most part. I've had vision issues, numbness, tingling, coordination issues but most consistent is fatigue and cognitive issues. The fatigue has changed my life. I don't want to make plans, I don't like to go out because I hit a wall and pay for it the next few days. The pandemic hasn't effected me at all because I'm just fine in my house and nothing has changed (except commuting to work). But what has been scaring me the most is brain fog, finding words, presenting to colleagues, memory loss and lack of focus. I try so hard and I know it effects my work and that scares me to death. I am not the person I was and my self confidence has taken a huge hit. I am an anxious person innately so these issues only add to my anxiety.

    I am not married and was unable to have kids but looking back I would never have been able to manage on my own. This is the most upsetting because all I ever wanted was to be a mother and wife.

    And this is "mild"!

    1. Hi. I'm Charles. I'm happy you are on this site. I was diagnosed with RRMS in 2000 just when I was appointed a professor. I lived with MS through my entire career of teaching. But during my teaching years I think my MS progressed to the next level (I forget it's name and don't even want to know). You speak of fatigue. This is a major symptom of mine. Actually, your list of systems looks exactly like mine. I worried about brain fog too (which I had often) and mixing my words, cognitive issues, etc. I had to give technical lectures in philosophy and logic and coherence never became a problem, but forgetting did. I found that people (students) understood when I just told them that I had MS. It's best to tell colleagues and supervisors that you have MS and that it may cause some "delay" (use that term). They will understand. Try not to be anxious and frightened. Things will work out.

    2. , Thank you for sharing your story. It's very helpful to know how people have handled MS in their professional life. Sounds like you found a way to share with colleagues and that helped everyone involved. Best wishes, Lisa, MS Team Member

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