What tests, if any, are used for diagnosis of NMO (neuromyelitis optica)? What treatments are currently available for NMO?
I was diagnosed with "myelopathy" at the Mayo Clinic in 2019 with no known cause. After a year and half at Mayo in Rochester, and several dozens of tests, scans, and blood draws, my neurologist determined we had "run out of options" regarding specific diagnosis (scans earlier showed a lesion on the spine) and effective treatment of symptoms (numbness of lower extremities). I was denied a second opinion in the neurology department by Mayo. At no point in my year and a half at Mayo was a mention of possible neuromyelitis Optica. Ironically, Dr. Flanagan, my neurologist at Mayo, was considered to be a specialist in NMO, but the disease was never part of our discussion/treatment while I was a patient at Mayo. Consequently, I was referred to the Undiagnosed Disease Program at NIH in Bethesda, Md. I was accepted into the program in 2020, but was put on "pause" due to the pandemic. Two months ago I was informed by NIH that I was no longer a candidate for their program, as they made the determination that "I was under the best care at Mayo and NIH could not do anything more for me." They recommended I seek further care with my local health care provider. I was referred to a local nuerologist (Marshfield Clinic, Marshfield, Wisconsin.) It was here that I was diagnosed with Neuromyelitis Optica Broad Spectrum and began treatment of rituxan infusions every six months. Presently, my symptoms have persisted: numbness in both legs, and I have also developed a drop foot on my right leg. I have to use walking sticks to get around, and my balance is compromised. Four years ago I was running 5 miles a day. Today, at the young age of 72, I have to push myself to walk 20 minutes with my walking sticks, and I have recently purchased a rollanator for better balance and maneuverability. I had my car modified for hand controls as I could no longer use my feet to drive. I also finished radiation treatment this summer for prostate cancer.
Obviously, my life has changed dramatically. I am looking for other options for treatment for my NMO. Any suggestions would be greatly appreciated.