Yuel Temesghen shares a story about living with neuromyelitis optica (NMO).
Hello, my name is Yuel Temesghen. I have been living with neuromyelitis optica (NMO) since May 2014.
It started for me with a rash on the left side of my face that felt like severe sunburn, but I hadn’t been in the sun, so after a couple days and no relief, I went to my doctor who gave me a topical cream and sent me home. After a couple days and no result, I went back to my doctor who said it might be shingles and sent me home with Valacyclovir. After taking that for a week it only seemed to aggravate it more and I spent the next month and a half throwing up about 10-15 times a day.
I went from 5’6, 155 pounds, somewhat muscular college soccer player, to 110 pounds. Within that month of June 2014, I went to the emergency room at George Washington four times and got discharged without being diagnosed with NMO. The doctors weren’t sure what was wrong.
I spent 45 days paralyzed
After a month of just blood work and getting negative matches, they had no answers, until mid-July when slowly, in 48 hours, I could no longer walk. I went to the emergency room where they finally decided to do an MRI, CT Scan of my brain and spine (for the first time). They found a significant amount of inflammation and decided to send the blood work to Mayo Clinic in Minnesota, which came back positive for NMO.
I spent 45 days paralyzed and on prednisone until September when I finally regained feeling in my legs and I did physical therapy (PT) learning how to walk and balance for a month. I was discharged in October and two weeks later I became paralyzed again because my doctor said they didn’t taper down the prednisone (steroids) and just sent me home without any meds because they didn’t expect the inflammation to come back so aggressively.
It felt like somebody was stabbing me with a knife
I spent the next four weeks at GW hospital on 100ml of steroids around the clock which caused me to gain 80 pounds because I was still on steroids after getting out. I also experienced minor vision problems in my left eye and by mid-November, I was back on my feet doing PT. I was then taken to the stroke unit midway thru my PT for severe nerve-like pain in my head. It felt like somebody was stabbing me with a knife and it just kept happening every few minutes for about three weeks. I was taking three different pain medications around the clock. I was eventually discharged the first week of December.
I had the smallest little nerve pain in the back of my left shoulder and my doctor assured me would eventually go away. Around June 2015, I noticed my left eye was blurry and I had an appointment coming up at NIH where they checked my optic nerve. It was severely inflamed. They started me on a strong dose of prednisone, but after two weeks there was no progress. They did a seven-day course of plasma transfusion, but that was also unsuccessful. I haven’t been able to see anything with my left eye since.
Around the end of the summer of 2015, I noticed the minor nerve pain in my left shoulder had gotten worse. It spread to the back of my neck and down my entire left arm. Fast forward two years later and my nerve pain feels 10 times worse and is now my biggest burden, yes, more than my vision loss in my left eye.
I have had endless PT sessions, two Botox injections, one Cortizone injection and about 50 acupuncture treatments. They haven’t really helped with this chronic nerve pain, which has been getting worse for over two-and-a-half years now. I have been receiving Rituximab for the past two years which has prevented and new relapse, thank God, but my vision loss and nerve pain seem to be here to stay.
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