A Central Nervous System Mystery
Hospitals have a nervous system. In the floors below ground-level the whirring of industrial laundry machines and dryers, the hissing steam from giant pots of stew, clicks of printers and buzz of fax machines in offices… all winding their results through the long hallways of the organism—sent and received, requested and delivered, functionally signaling life.
It was the summer of 2011 when I waited in a little metal chair squeezed into the aisle of a maze of cubicles, facing one that I was promised would soon be occupied. The engraved plastic plaque read “Patient Advocacy,” and the person I was waiting for was about to get an earful. She hurried into her chair and swiveled it toward me expectantly.
“How can I help you?” was the satisfying greeting. I had not had any luck at the nurse’s station, so she’d better help me.
Many floors above, feeling terrified, lost and alone among thousands of other patients, my twenty-nine-year-old son’s life was being endangered by neglect. The day before he’d shown up in the Emergency Room when a recent onset of numbness, loss of coordination, and slurred speech had become too alarming to ignore. That morning when he tried to brush his teeth he was unable to squeeze the toothpaste tube. We’d been speaking about this strange numbness and other issues for a couple of days and decided to see if it would just go away, but that morning I told him to head straight to the closest ER. He lived in Brooklyn, so a visit to the ER was an all-day affair.
Positive, Not Positive
When they finally examined and admitted him, he had a brain MRI and a spinal tap. They made what they believed was a positive diagnosis of Multiple Sclerosis (MS). I arrived from New Jersey the next day to hear, in slurred speech, that no one was feeding him or giving him water. He had not had any water all day. There, on the bedside tray, was a nice big pitcher of water with ice. Next to it was a lovely cup of water with a straw. The orderly, nurse or whoever had deposited these by him did not look at Tim or hear him try to call out that he needed help.
After I held the straw to his mouth for several long draws of refreshing, cool water, I went to the nurse’s station. “All we can do is give him the water,” a nurse sitting at her computer told me. “Unless someone is assigned to him to feed him, there’s nothing more we can do.”
When no one could advise me how to make that happen, I headed down, down, down to where someone with more authority could send a message up to save my son who could not use his hands. His nervous system was under attack, but was the hospital’s functioning?
Over the next day or two my son went blind in one eye and, in addition to his hands, lost complete control of the left side of his body. He was quickly getting worse, even though they had begun the standard treatment for MS. They were no longer positive that was his problem.
I met with the woman down below twice more. In my final visit I requested that my son be released. It was obvious to everyone that he was knocking on heaven’s door, and the neurologist assigned to him was playing whack-a-mole. The next thing he wanted to try was a biopsy of Tim’s ocular fluid. I wouldn’t allow it. They were clearly out of their depth and my son’s worsening symptoms were ominous. His lungs or his heart could be the next to stop functioning as subsequent MRIs revealed more twinkling lights, and his spinal fluid more discarded myelin sheath.
A friend of a friend knew the secretary of the top MS doctor in the country, at Mt. Sinai in upper Manhattan. She made the introduction. He had written the textbook on MS, but his role was no longer as hands-on, so he referred me to a colleague in his practice and I was assured he was actually better equipped to focus on Tim than the head of the practice. At this point they were wondering if perhaps he had a rare form of MS.
Insurance would not allow a transfer from one hospital to another. Tim would have to be discharged, and then show up at Mt. Sinai the next day for a regular office visit and be admitted by the doctor there based on an examination. The doctor agreed to this and, with no time to waste, I made the appointment for the next day.
Standing in a corner of the hallway near Tim’s room, the head of neurology, a hospital executive, and my new friend the patient advocate, discussed my very rare request in hushed tones. The hospital was risking a great liability by releasing Tim in his condition, but after a week of worsening symptoms and no results, and with the MS specialist at Mt. Sinai ready to take him, they agreed.
With help, I was able to get Tim into a cab and into his own bed for the night. Nothing was any different at home than it would have been at the hospital. In fact he was in better hands, as long as his organs didn’t shut down in those twelve hours.
Like an Episode of House
A semi-circle of bright futures arched around the end of his bed, clipboards in hand. I sat in sacred gratitude as the doctor at Mt. Sinai spelled out Tim’s case to the residents. Within a couple of days he was diagnosed with a rare, potentially deadly presentation of Central Nervous System (CNS) Vasculitis—primary angiitis of the central nervous system (PACNS)—the first case like his at Mt. Sinai. His treatment began to help right away.
Tim had a large, single room with what New Yorkers would consider a million-dollar view. High up in the building, wide windows looked straight onto Central Park. He stayed in the hospital for a while, we visited frequently, as did his friends, bringing him downstairs to a beautiful atrium for coffee. He regained his eyesight and eventually his body would function almost normally. He left the hospital on high-dose prednisone, and after tapering, has remained on Imuran. He never regained all of the feeling on his left side, but to look at Tim, you would never know he was still being treated for such a serious disease.
When our local neurologist refused to see James, and was not willing to educate himself with so much available existing information on ME/CFS, my experience with Tim jumped to mind. Mt. Sinai, an expert in MS, and a team of residents, all rallied around Tim—curious and dedicated. Within a week they found the real diagnosis was not MS, but CNS Vasculitis and saved his life.
Where is the curiosity? Where is the dedication? CNS Vasculitis is believed, unlike ME/CFS. I watched my son, as families around the world watch theirs, worsen year by year because doctors are not educating themselves and are giving dangerous, damning advice to patients. My forthcoming book, Music in His Mind, tells our story.