Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, TM, Voices of NMO
She looks good, feels good and can do most everything she ever did in her life, though she is now eligible for senior discounts.
Paula has NMO. Lupus. Hashimoto’s Disease. Sjogren’s Syndrome. Raynaud’s Syndrome. Postural Orthostatic Tachycardia Syndrome (POTS). Fibromyalgia. When she was just 15, Paula was diagnosed with Idiopathic thrombocytopenic purpura (ITP) and had her spleen removed.
This is her NMO story. Paula was an x-ray technician and a flight attendant. She had a solid medical background. So when she started feeling tingling and numbness in her extremities 11 years ago, Paula diagnosed herself with MS. And then she proceeded to ignore it. One night, while standing at the sink, Paula’s husband began to rub her shoulders. It burned as if she had been baking under a strong sun all day, though she hadn’t been outside. This too she ignored.
Soon after, Paula was on a 3-day flight sequence, and felt awful. Her chest was heavy, she felt nauseous, and she was exhausted. She still had numbness and tingling around her body. And so finally, when she got home, she went to the emergency room. The doctors thought it was nothing, and then thought maybe the symptoms had something to do with lupus, which is the only disease she knew she had. They sent her to a rheumatologist. This doctor thought the symptoms were in Paula’s head. She didn’t see MS, she didn’t even see lupus. Paula told her that she’d already been diagnosed with ITP as a teen, and with lupus at age 50. Then the doctor “woke up.” She reluctantly ordered a head and neck MRI.
Paula and her husband were in San Diego visiting their daughter when the results came in. Her doctor told her she had transverse myelitis, and that she should hurry home. As a flight attendant, Paula always flew stand-by, and there were no available flights. Her doctor kept calling. Paula had never heard of transverse myelitis, and the urgent calls put her in shock. When she finally got home, she went straight to the hospital, where she was given Cytoxan, a chemotherapy agent. She had infusions every two weeks for a few months. It was when she noticed handfuls of hair in her shower drain that Paula lost it. But a few months later, she felt normal again.
Paula’s doctor apologized. She told her that she had learned a valuable lesson from Paula:
In this way, Paula’s experience reverberated out to all of this doctor’s patients. The doctor was a recent graduate of medical school, and had a professor who knew a lot about a very rare disease called NMO. The doctor thought, though the likelihood of Paula having it was very slight, that maybe she should get the test. But no, she decided, when she saw how expensive it was. Paula assured her she had good insurance, and though she figured it was just a lark, the doctor sent in Paula’s blood. It came back positive.
She wanted to send Paula to her professor, but he wasn’t accepting any new patients. She persisted. She even went to a cocktail party just because she knew the professor would be there. Hisoffice called Paula the next day. This rheumatologist/immunologist prescribed CellCept, which worked well for two years. Paula then figured that her attack had been monophasic, and took herself off the drug. Sure enough, she relapsed. No longer trusting her to take her pills, the doctor prescribed Rituximab – one infusion every six months. She has been stable on it ever since.
After Paula was diagnosed with NMO, she was bombarded with diagnoses of other autoimmune diseases. Still, she managed them with a few medications until recently. For the past six months, Paula and her husband have been on a ketogenic diet. Together, they’ve lost over 50 pounds. In addition, Paula has been able to take herself off of all her medications except the Rituximab, and they both feel great.
Paula has more than a handful of autoimmune conditions, and she is healthy and active. She knows in some ways she lives in denial, and is rebellious by nature. These characteristics serve her well. She refuses to be taken down by her illnesses or the medical establishment, and recommends always standing up for yourself, listening to your own body and fighting for what you need. She is also sure that the brain is itself a powerful drug, and has used that power in herself to believe in her strength and well-being – – and to find it.
As told to Gabriela Romanow – May 2018