My Slide Into Secondary Progressive Multiple Sclerosis

My Slide Into Secondary Progressive Multiple Sclerosis

While in nursing school, I was diagnosed at the prime age of 25 with relapsing-remitting multiple sclerosis (RRMS). The diagnosis was quick and to the point. I believe this was because we were on an academic state university campus. I know that typically people have symptoms for years and years before they get diagnosed. I was one of the lucky ones, if you consider that lucky. I returned back to class. I don’t think this was normal.

I continued nursing school with only small problems. After graduation, I became interested in cardiac rhythm disease management and started working for the medical device company Medtronic, at the time, my dream job. I remain there for as long as I could work safely which happened to be six years. At which time, I had been on every medication available to me. But my RRMS had evolved into secondary progressive MS (SPMS). According to the national MS Society, this happens within 10 years and 90% would transition within 25 years. For me it was just nine years. It was gradual not like normal remissions and flare-ups. I had previously stopped driving. So it wasn’t just that. My walking became increasingly more labored. Until I was wheelchair bound. I went to a new neurologist and he said I was in SPMS as soon as he saw me in a wheelchair. He said any change in your baseline constitutes progression.

So my life began to look completely different from when I was first diagnosed. Over the next few years, I not only had to quit my job I also had to move from Washington DC back closer to family in Louisiana. Something I initially dreaded. I felt like a failure. Plus, my husband couldn’t move back as soon as I could. So I was with my loving family for about a year before he made it to Louisiana.

Unfortunately, there is no treatment for SPMS. Currently, I am on a chemotherapy drug commonly used to treat breast cancer. Personally, I find this unacceptable.

I need help with daily tasks. This includes bathing and toileting. But one of my biggest problems is my inability to multitask. It requires a level of cognition I no longer have.

This has been my journey with SPMS. It has been cushioned with love from my husband and family and eased with humility.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • north-star
    4 years ago

    Sliding is the perfect way to describe this experience. It’s so hard, so much is taken away. And it is humbling, anyone who falls down in public knows that feeling. I’m adding “sliding” to my MS imagery.

  • Jen
    4 years ago

    It’s just I went to my MS specialist… Well actually her NP. Anyway I told her I have been feeling worse for a few months and felt like I wasn’t able to do things like I was before. I also told her I thought I was having a relapse. She said well let’s get the MRI and see what it says… And that was it.

  • Jen
    4 years ago

    Still confused with this MS. I thought they went by your MRI to see how many if any new lesions you have to determine how your MS is progressing. Or am I totally misinformed?

  • skcullers
    4 years ago

    My neurologists, who still does MS research , said they are finding that some people have many lesions and liitle disability while others have few and are extremely disabled so no longer such a correlation between the two.

  • JULIE SAVENE
    4 years ago

    My Dr. has mentioned SPMS but I am reluctant to accept it….I have looked it up & have an MRI & an appt this month so I will discuss this with him. I have greatly declined in the last 3 years (I don’t take a step without my walker & use a wheelchair for distances and extended periods of sitting like restaraunts/church etc).
    I have changed meds 2 times in the last 1 1/2 yrs to no change?? I guess I am reluctant to accept this next phase of my MS journey..I am only 52, and have had to give up so much already that I don’t know if I can give up any more…

  • allinjay
    4 years ago

    Nicole, your story is very similar to mine. I am a retired(medical) Clinical/Compounding Pharmacist. I’m 68yrs old and a male. After receiving my Doctor of Pharmacy, which required 9 yrs of higher education and after nearly 4 yrs in the military, I was finally able to practice my profession at age 32yrs old. I was diagnosed at the age of 35 with remitting MS. Like you, my symptoms progressed rather slowly until I was around 40yrs old. SPMS hit like a lightning bolt and I suffered a loss of many memory/motor skills. My professional career was FK.ING OVER. Now, as I lie in my bed for approximately 20-23 hours a day EVERYDAY for many years now I too wonder if there will EVER be treatment to reverse SPMS. I probably should change my user name but hey you know I just forgot what I was saying to you hahaha.
    Best of luck to you sweetheart.

  • 2anhpfx
    4 years ago

    Thank you for your story and your incredible courage. Many, many hugs.

  • Fayezdayz
    4 years ago

    I too am on a chemo drug for my SPMS. I am on cytoxan. I have only had one infusion, and unbelievably my walking has improved., I am able to walk with just a cane again. I never expected this, but I will,take it!
    I wish you the best, Nicole.

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