My NMOSD Story
by Bob Buchanan
While traveling in Spain in May 2013, I was overcome with nausea, vomiting, and seizure-like spells consisting of serious bradycardia, tonic stiffening, and loss of consciousness. I vomited every hour for the first day and also developed intractable hiccups that lasted 24/7 for many weeks. I was completely helpless in a foreign country, except for my terrified wife, who did everything for me, and occasional support from our tour guide.
Since I had no activity in my bowels, despite the distension and acute distress in my upper GI-tract, the Spanish hospital diagnosed me with a small-bowel obstruction and was considering surgery. This was terrifying since the diagnosis was very questionable, the hospital seemed poorly equipped, and I was rapidly getting worse. It took direct intervention by the U.S. Embassy in Madrid to get me even a very primitive, fifty-year old heart monitor. My niece, who is a cardiac intensive care nurse, flew to Spain to give my wife direct support. Once there, she concluded that I needed to quickly get expert care in modern facilities.
My family arranged an air ambulance to take me back to the United States, and I was hospitalized at Mayo Clinic Hospital in Scottsdale. Initial workups focused on autonomic dysfunction and excluding seizure disorders. I was readmitted to the hospital in August 2013, with an acute exacerbation of the same symptoms.
My MR images showed lesions in the dorsal medulla corresponding to the area postrema. This is undoubtedly the cause of my intractable nausea, vomiting, hiccups, and spells. The scenario is highly consistent with neuromyelitis optica spectrum disorder (NMOSD) and confirmed by the presence of aquaporin-4 antibodies. I was treated with corticosteroids (IV and then prednisone 60 mg daily) and placed on Imuran. My dose was gradually increased to 150 mg daily, and my rapid improvement with this treatment further confirmed the NMOSD diagnosis.
I had a feeding (PEG) tube installed through my stomach lining since I was unable to swallow and had difficulty with other autonomic functions. I had lost about 30 pounds since the episode began three months prior in May. The next crisis came in November, when my PEG tube was removed and the site became infected, leading to nearly fatal septic shock and multiple liver abscesses, probably due to very low immunity from the Imuran (azathioprine). I recovered through emergency treatment in the Mayo ICU and direct supervision by a Mayo infectious disease specialist. Soon, I was taken off Imuran and prednisone in favor of rituximab, which seems to have been effective with no negative side effects.
I have had no relapses of NMOSD since the initial attack four years ago, and I have recovered most of my functionality through diligent therapy. I still deal with a neurogenic bladder, occasional balance problems, complex sleep apnea, and other autonomic issues. These issues have improved greatly with treatment at Mayo Clinic and physical therapy. I have a personal trainer who works with NMO and multiple sclerosis (MS) patients to restore lost functions and basic conditioning in lieu of traditional muscle building.
Access the companion piece, “IT WASN’T SUPPOSED TO BE,” here.