Lost

I was diagnosed with RRMS in 1998. I was 20 years old with a 9mo old son. I woke up the day after Christmas 1997 and thought I was having a stroke. I was a CNA at the time and was having every symptom of a stroke and made my son’s father take me to the hospital and after hours of testing, I was sent home told I had a brain tumor and a neurologist will contact me after the new year.

A relief to know it was MS and not a brain tumor

I went to my parents home to stay because that was my childhood home and I kept my son with me. It was a couple of weeks after the initial ER visit when my neurologist called and talked to my mom and told her to tell me it’s not a brain tumor and my neurologist was wanting to see me right away in the ER. She explained to me that she thought it was multiple sclerosis which was a relief to know it wasn’t a death sentence.

Started on Tysabri

She did the lumbar puncture and MRI and everything came back positive for RRMS, and I already knew about multiple sclerosis because I worked in a nursing facility. I started on Betaseron after a prescription of Prednisone, I was feeling better with occasional flare-ups. My neurologist had discussed changing to Tysabri when the FDA approved it. I started the Tysabri in 2007 after my youngest son was born and I had been stable for years until I went to Texas to visit my brother and when I came home it was January 2016 I had a positive JC virus and she had me stop the Tysabri and get a second opinion. At the neuroscience department at the University of Utah, I was told that Tecfidera would probably be the best to start taking, so I changed medication.

Continuing to decline

I notice now that’s about the time I started getting worse and I wasn’t walking well and I continued to decline. I was told that my neurologist was wanting me to go back to the University of Utah and I began taking Ocrevus I have continued to take Ocrevus every 6 months. I kept declining to a walker in 2018, and today I have declined to a wheelchair since January 2020 by my neurologist diagnosed me with secondary progressive multiple sclerosis in December 2019.

Feeling lost and alone

I feel so alone and lost especially after my parents passed away my mom was told in 2001 she had Hepatitis C after her hysterectomy she hemorrhages in 1983 and of course nobody knew anything about hepatitis in the ’80s. My mom lost her fight in April 2007. I lost my dad to his diabetes and heart disease in March 2015 right after I finalized my divorce to a narcissist who was emotionally and verbally abusive. I have my 3 children from the marriage, who I love beyond words.

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