By skyforbes 
In 2014, Erin Storch looked in the mirror and felt as if she were drifting leftward. It was a feeling she didn’t know how to fully describe. She had been on maternity leave, and had recently returned to her job at a hospital consultancy in Washington, D.C. Storch had been promoted while on leave, so she was learning something new at work—and it seemed strangely difficult to absorb the information. She was also pumping milk three times a day. People suggested that what she was experiencing might be profound exhaustion; she disagreed. “I knew in my gut that the way I was feeling was not within the spectrum of what you would consider normal,” she said.
There were further unsettling sensations: “Coffee tasted like water. The left side of my body was weak and numb.” Storch went to see her ob-gyn, who sent her for a CT scan. Nothing unusual showed up.
Storch’s son was six months old when her symptoms manifested. When he was seven and a half months old, she walked down the stairs while holding him, and fell. Her son was O.K. “But then I knew that something was really wrong,” she said. She found a new doctor, who sat with her and her husband “for maybe forty minutes. It was just a conversation—there wasn’t even a physical exam. He said to me that he knew a lot of moms with demanding careers and that this was not that.” She started to cry from the relief of being believed. He scheduled an MRI for that evening. “But since there was some time to kill I decided, being me, to go to work,” she said. She crashed her car into a pole in a garage on M Street.
The MRI showed that Storch had several lesions, indicative of inflammation, in her brain. She was admitted to the hospital the next morning, where she was eventually told that she had multiple sclerosis, a chronic disease characterized by inflammation in the brain and the spinal cord. While Storch was in the hospital, her mother and her sister used breast milk from the freezer to feed her son, who had never had formula.
Despite her diagnosis, there was little clarity. In the hospital, she recalled, there was one doctor who, in response to her husband’s questions, replied, “Have you heard of Google?” (Storch says that she did go down “a Google rabbit hole, and I didn’t find anything that helped me.”)
After Storch went home, she started seeing a neurologist, who, she said, “was doing the best with the tools they had—this was not an M.S. specialist.” The neurologist put her on a pill that had recently been approved by the F.D.A. She began seeing a psychotherapist, too. “She wanted me to educate her on the disease,” Storch said. “She would ask questions like ‘Is it possible that you could be in a wheelchair?’ ” Storch realized that she didn’t know. Also, the medication she was taking didn’t seem to be helping.
Around that time, Storch received an e-mail from someone she knew at work, recommending a doctor. “That was how I found Dr. Sadiq,” Storch said.
Saud Sadiq is the director and chief research scientist of the Tisch Multiple Sclerosis Research Center of New York and the head of the adjacent clinical practice. Speaking with his patients can feel like speaking with devotees of one of those bands which border on being a religion. Patients told me that he talked with them until they ran out of questions, that he saw them on a Saturday so they could have their normal life, that he gave them his cell-phone number. Amelia Collins, who has been his patient for twenty-three years, told me that she once heard his cell phone ring while he was performing a spinal tap. He said to her, “You see, this is the only time I won’t answer my phone, because I have your spine in my hands—otherwise I would answer.”
Storch said, “We sat in his office, and everything that I thought a health-care experience should be—that was what it was. It felt like he had unlimited time.”
There are two main types of M.S.: a relapsing-remitting form (R.R.M.S.) and a progressive form. Both attack the brain and the spinal cord and can become debilitating if not treated, but R.R.M.S. usually responds well to current therapies. The progressive form, which often presents as what is called the primary-progressive type (P.P.M.S.), which affects about fifteen per cent of patients, tends not to. As their names suggest, R.R.M.S. is characterized by symptoms that flare up and then often spontaneously remit, and P.P.M.S. proceeds more inexorably. Sadiq told Storch that she likely had R.R.M.S., and advised her that an aggressive course of treatment could stave off further disability. Once damage is done, it is often irreversible. He told her that the medication she was taking may as well have been a water pill.
Cartoon by Sarah Kempa
“The other thing about Sadiq’s practice was that everything was there,” Storch said. Sadiq’s center, which he founded in 2006, has an unusual structure. Research, occupational therapy, social work, nutrition counselling, MRIs, physical therapy—they all take place on two floors of a building on Fifty-seventh Street, in Manhattan, and all are devoted almost exclusively to M.S. The center’s research arm, a nonprofit supported in part with funding from the Tisch family, has space for lab animals and for growing experimental tissues, and nearby there are rooms for working with weights, for speaking with a social worker, for receiving infusions of steroids—everything an M.S. patient, or an M.S. researcher, might need. Storch sees a nutritionist there, and for the first year she regularly sought counsel from a social worker on staff. “I needed help with my mental health very badly,” she said. Storch disbelieved Sadiq’s optimistic prognosis: “I would go to the social worker and say, ‘How do I know he’s not lying to me?’ She would reassure me and say that she had been there for ten years, and that if that was how he was practicing, we would probably know that by now.”
Sadiq told Storch that she would have no more disease progression, and, she said, “that has been the case.” She takes a drug, Ocrevus, that eliminates her B cells, an element of the immune system which, in M.S. patients, attacks the nervous system. Her Ocrevus infusions, given twice a year, are accompanied by an infusion of steroids. “I know that knocks me out for a couple days, so I plan on that,” she said. “I save a bad TV show to watch.” She also takes two medications that help with symptoms: gabapentin for numbness and tingling, and modafinil for fatigue. “I used to call the office so often, but now M.S. is less at the forefront of my life. It’s just something I manage like I manage everything else,” she told me. Storch struck me as professional, reserved, and put-together. She teared up only once, when she said she didn’t know what her life would be like today if she hadn’t met Sadiq.