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On Monday morning, Pam had a headache. For a woman who never got headaches, this was notable. In addition, when she turned her eyes right and left, she experienced eye pain. She took some ibuprofin, and went to the office, where she worked as a dental hygienist.
On Friday, Pam had an existing appointment with a doctor treating her sleep apnea condition. Her blood pressure was quite high; the doctor figured that that was due to her headache, which had lasted all week. She was told to continue on the ibuprofen and to call her primary care doctor if it didn’t get better on its own. Pam returned to work. That afternoon, though, when she stood up, Pam felt off-balance, like she had had one drink too many.
That night, Pam slept until 3 am, when she was rudely awakened by stabbing pains in her left eye. Since her husband, a firefighter, was at his job, Pam drove herself to the nearest emergency room, where she was given a cat scan of her brain and more pain medications, this time administered through an IV. While she was waiting for the pain to subside, her eyes were so sensitive to light that nurses turned off the light and closed the curtains in the room in which she waited. At one point, while describing her condition by phone to her husband, Pam realized she had lost sight in her left eye. She called for a doctor.
They brought in a cart with ophthalmology equipment and administered lots of tests over 12 hours. Then, they sent Pam home, even though she had to drive herself with vision in only one eye. She was told to call her ophthalmologist in the morning if the pain had returned and/or her vision was not normal.
When Pam woke up the next day, which was a Sunday, the stabbing pain had returned, and she called her ophthalmologist. His partner met her in their office, and diagnosed optic neuritis. He sent her to a hospital for an immediate Solumedrol infusion, followed by three more days of the same infusions, plus a ten-day regimen of oral steroids after that. In the hospital, Pam was also given lots of blood tests, including one for NMO. It came back negative.
Some six weeks later, in January of 2017, Pam had an optic neuritis attack in her right eye. She and her husband spent their wedding anniversary in the emergency room, where she was given yet another round of Solumedrol with follow-up Prednisone.
And a month later, her left eye was again in distress. This time, the Solumedrol infusions lasted five days, and Pam was given a 30-day dosage of oral steroids. She hasn’t relapsed since.
After her last attack in February of 2017, Pam actively sought answers. One doctor assured her she didn’t have MS, and sent her on her way. Another doctor, known for getting to the root causes of maladies, told her that there weren’t always answers, and left her no wiser than before. Pam made an appointment with another reputedly great neurologist, who couldn’t see Pam until the fall.
In the meantime, Pam still had daily headaches, ranging from mild to debilitating. They seemed to be triggered when she looked at screens, be they television or computer; or by bright lights, especially fluorescents. Her eyes were always sore to one extent or another.
Finally, in October 2017, she saw the neurologist, who checked her blood with a “new” NMO test, and sent it off to the Mayo Clinic. In two days, Pam was diagnosed with MOG positive NMO. Shenow gets a single infusion of Rituximab every six months.
Though Pam suffers from neuropathy in both feet, regular headaches, muscle spasms, and periodic stabbing pains in her legs, she does not know if these symptoms are related to NMO. She does wear glasses all the time now, and is still very sensitive to light. She can’t drive long distances, especially on highways and at night, and she had to give up her beloved job as a dental hygienist, because her depth perception has been altered and the work is both detailed and sensitive, and Pam’s vision is no longer good enough.
Still, Pam is a happy woman, navigating her new normal, with the help and support of her well-trained husband (before he was a firefighter and EMT, he was a rehabilitation consultant.) She volunteers in non-clinical dental work, and manages to keep busy, especially enjoying visits from her grandchildren.
Pam considers herself lucky, given how her early treatments, even before the doctors knew she had NMO, were the right ones. Her diagnosis came relatively quickly, and she is far better off than many. Pam knows that everyone has something they deal with. She carries on as best she can, pushing forward each day, and maintaining a positive, even joyful attitude towards life.
Knowing she has a rare disorder, Pam is open about NMO, and looks for every opportunity to talk about her condition and the disease as a whole, to raise awareness among those untouched by the disease. She has also found it useful to find, even electronically, others with NMO, in order to share experiences, ask questions and gain insight.
NMO has reinforced a life lesson that Pam has always known. Stay positive. Your thoughts determine your actions. In tough moments, she stops, breathes deeply, and knows that these moments will pass.
As told to Gabriela Romanow on 11/12/18