My battle with this disease started in January 2013 when I first began experiencing terrible nerve and back pain and numbness in my fingers and toes. The pain so intense that I ended up back and forth in the ER. Doctors couldn’t figure out what was going on with me and diagnosed me with Shingles. They felt that since the pain was on my side that it couldn’t be anything else. A month later, exactly Feb 14th, I began vomiting which non stop. 5 days later, I couldn’t get out of bed because I began experiencing systems of vertigo and extreme weakness. My husband again was taking me to the ER and again, they could not find out what was wrong. The ran so many test, CAT scans, EKGS, blood work, everything they could think of and could not find the problem. Eventually, after a month and 20lbs down, I ended up seeing a neurologist who diagnosed me with BBPV and neuropathy. I lived with this diagnoses for 7 years and permanent damaged to my optic nerve in my right eye. It took 6 months for the nausea and vomiting to subside. I never regained appropriate balance.
Almost exactly 7 yrs later, February 12, 2020, I became nauseated, with a migraine and pain in the back of my eyes. February 14th, I began vomiting non- stop, and my journey back to the ER began. This time, was worse. The first couple of weeks I lost 15lbs, then I got Strabismus (my right eye crossed), causing double vision. Shortly after, I began having a strong loss of sensation in my legs. I was going paralyzed, losing sensation in my truck area as well, and then the nerve pain. It stated in my face and began traveling down my body. I lost bladder and bowel function. By this time, I was 40lbs down within a month. I had a weird vibration in my voice when I talked as well.
I didn’t realize that this was associated with what had happened to me the first 2 times initially, not until almost a month had passed. I was sent to a Ear, nose and throat doctor who took one look at me and sent me back to the ER and told me to demand a MRI with and w/o contrast which they did and found a lesion on my brain with demyelination. My current neurologist did a spinal tap and sent the results off to the Mayo clinic and I finally received a diagnoses of NMO showing I tested positive for the Aquaporin-4 antibody.
Currently, I am still on a walker and am getting Soliris infusions once every 2 weeks indefinitely. I have permanent nerve pain, numbness and tingling sensation all over and still have a small lesion on my brain stem. My vision is getting better. I have muscle weakness and with increased activity, my heartrate increases and have some trouble breathing. Life is a journey but I am confident and eager for the next chapter of my life, living with NMO.