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Surviving NMO in the Colorado Rockies

Johnney (Doug) Newby

Like so many of my NMO brothers and sisters, I was misdiagnosed prior to being diagnosed with NMO. For about a year I was diagnosed as having multiple sclerosis, before getting the right diagnosis of Neuromyelitis Optica was made. During that time, I was put on medication for Multiple Sclerosis, which didn’t work and only led to more and more flares. I continued to relapse and doctors decided to send me to a specialist in Denver where they did labs and found that I tested positive for the NMO IgG AQP4 and so I began treatments for NMO.

 

I’d have to say that I’ve never truly maintained stability, until recently. Multiple Optic Neuritis flares have taken a great deal of my vision and so I have quite a visual deficit. 

 

Previously, I was on Rituxan every six months for quite some time, but again continued to relapse. Multiple flares of Optic Neuritis, which did not respond to steroids led to multiple hospital stays so that I could have plasmapheresis treatments, one of the only things that helped me recover from flares. However, it’s become difficult to clinically diagnose new flares as my doctors dislike giving MRI’s as they have to sedate me due to claustrophobia. 



In June of 2017, I had an MRI which notes I had new lesions on my spine. I’d never before experienced transverse Myelitis so this was a new and scary experience. My disease activity was no longer confined to just my optic nerves. I now have lesions on my spine from T 5-6 and T 8-10. 

 

Because of this new activity my neurologist had me do IVSM to treat the lesions and worsening symptoms. 

 

 In July of 2017, my neurologist decided that because I was experiencing relapses on Rituxan, it was time to switch to a different preventative medication. I began receiving Tocilizumab (Actemra), which is a monthly infusion instead of the every six months infusion of Rituxan. 

 

It’s been a while since starting my new treatment and I’ve found that for the most part I’ve remained stable. The residual symptoms are hard to handle though. Spasticity and nerve pain are among the hardest to deal with. You never know how you’re going to feel from day to day, and that’s one of the biggest struggles.

 

I’ve found that true friends and those I’ve found in support groups are a great way to deal with the day to day activities. Between the Facebook groups and the teleconferences, I’ve made some amazing friends, many of whom I now consider family. I’m not sure what I’d do without their support.

 

And so, in Colorado Springs, and the heart of the Rockies I continue to fight NMO. I stand strong against a disease that would knock me down given the chance. Every day is a new day that I fight and struggle with what NMO does to me. But I plan to keep fighting! 

1 Comment

  1. Bob on August 16, 2019 at 8:30 pm

    Sorry to hear your struggles. Being as your are in CO I was curious if you have tried THC or CBD to deal with the nerve pain and if so have you found a dosage that is effective?

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