My Never Ending Story

So it all started in 2011 during a hurricane here in NC. The power had gone out, so I figured I'd go out to my car and listen to the weather updates on the radio. When I stepped outside the rain was very cold and shocked my skin. I got to the car listened to the weather, went back in, and an hour later had to use the restroom so of course I tried to stand up, but when I did, I fell back down I couldn't feel my legs. I thought maybe they were just asleep from sitting too long, unfortunately, a week later the feelings hadn't come back and I ended up in the hospital.

My first diagnosis

Several tests, blood work, and scans later, my doctor diagnosed me with transverse myelitis and sent me home with a walker. Not even 5 months later I ended up back at the hospital and they did a spinal tap and MRI they then got the results and diagnosed me with Multiple Sclerosis. I had lesions on my spine and brain. I went through rehab for about 4 weeks to teach me how to walk and how to deal with my "New Normal", whatever that meant. I was diagnosed with RRMS.

My health took a major turn

A year later I was living my best life in Key West, Florida. My MS was there but on the back burner. I wasn't on any DMDs at this time and was just enjoying life at 27 years old. Everything seemed great up until 2016 when I started having relapse after relapse and wasn't getting any better. I was told my MS had progressed to SPMS. I cried because I couldn't do the things I loved anymore and life slowed way down for me. I had tried 2 different DMDs and both I had severe reactions to, and due to other health issues, they couldn't put me on anything else. Now it's 2024, I'm stuck in a bed most days and my vehicle is a wheelchair. I miss the old me, the happy me. I do feel like I'm in a never-ending story and I'm only 39 but when does the pain, the depression, the suffering end? I just want the old me back.

My never-ending MS story

I'm now diagnosed with PPMS, I can't stand longer than 6 seconds. I waddle. I have chronic pain. I have optic neuritis and no strength in my hands. I mix up words. I have mood disorders, afib, chronic anemia, lipo lymphedema, bowel and bladder issues, female issues, anxiety, PTSD, massive depression, and my never ending story of Multiple Sclerosis.