Misdiagnosed at 68 years old

Two years in the making. I lost 18 pounds, had severe pain in my toe in my right foot, next to the little toe. Severe pain in my back where your bra strap sits, started dragging my right leg. Made a phone call to MAYO clinic in Rochester Minnesota, and they got me in within a week. I was told there that my fascia was the cause because it was sticky and not moving properly. WRONG. I did have an episode with half of my right eye, my vision looked like I was looking through a waterfall (which cleared up on its own).

The crisis and hospitalization

I ended up at Ortho Nebraska, where I was diagnosed with Acute Transverse Myelitis. There were no beds available in any hospital. The physician on call was horrified for me. He started bags of steroids, and I went home. He begged me to stay, but I was two hours from home. By the next morning, I ended up in the emergency room. They had no clue what to do so I headed to Omaha via ambulance. There I spent a week and was sent home. They did blood work, MRI's, and a spinal tap. I did go through a week of uncontrollable bowels. Running to the bathroom to pee and not making it.

From MS to an NMOSD diagnosis

That first night back home, they called and said I have MS, and to get into Neb Medicine ASAP. Well, you just cannot walk in there without a referral. I spent another week trying to get the referral. Finally, I did get to see a wonderful Dr. who took my case. She called me the first evening after our first meeting and said, you do not have MS, you have NMOSD. What the heck, how was this missed the first guy had already found it. My Dr. was board certified neurologist specializing in MS and neuroimmunology.

Treatment options

After another meeting with her, she explained the three options for the treatment. I picked Uplizna. So far, I have some pain still in my back area, weakness in both knees, and weakness in my feet. Still have pain in the darn toe where it all started. I have been through physical therapy and massages, which did help some. I am starting red light therapy tomorrow, and if all works well, I will be getting my own red light mat for home.

I was paired up with a lady in Texas, but she has stopped communicating. I liked the one-on-one communication with her, sharing stories. This is an unbelievable disease. I have only shared it with my family and a few close friends. It is so hard to explain, so it is best kept at home. God Bless:)