The defining element of Adam Gottschalk's life today is that he has multiple sclerosis. This wasn't always the case. He lived a more-or-less-normal life for a while, even after his diagnosis, but like most people with M.S., he was always bracing for the next relapse of partial paralysis or numbness or vision failure or any of the other attacks the disease unleashes unpredictably on the nervous system. Thirteen years after his diagnosis, Adam is now a case study of the degeneration that eventually occurs in everyone who gets M.S. He is only 42, but his physical capabilities are like those of an 80-year-old. His hands tremble, he walks with difficulty and his speech is labored and halting.
Christopher Morris/ VII, for The New York Times
Adam Gottschalk, left, who has M.S., and his older brother, Chris, a neuorologist, have differing opinions on a treatment Adam received.
Nathan Denette/The Canadian Press/Associated Press
Dr. Paolo Zamboni
For a time in the early 1990s, Gottschalk busked outside the Shinjuku subway station in Tokyo, playing Dylan and Beatles songs, and of all the things M.S. robbed him of, it's the ability to play guitar that he longs for the most. "I miss that part of myself," he told me when we met at his home last winter. Because he can't drive, Gottschalk spends most of his time inside his single-story house north of Tampa, Fla. He works part time operating a natural-perfume business, writes plays and poems, listens to obscure music at high volume and smokes a lot of pot (he says marijuana helps with the chronic pain that's one of M.S.'s more baffling symptoms). Several times a day Gottschalk takes five different drugs: one to keep his M.S. from getting even worse, three for his seizures and an antidepressant that helps him sleep. Dietary supplements cover the buffet in his dining room.
In the last couple of decades, nine new drugs have come on the market to treat M.S.; at least four more are currently being tested on humans. Few diseases have seen such radical transformation of treatment options in such a short time. Yet for all the new options, many of the 2.1 million people worldwide afflicted with the disease (400,000 of them in the United States) have not seen improvements, and some M.S. patients find that the adverse reactions from the drugs aren't worth the benefits.
Gottschalk's neurologist started him on the M.S. drug Copaxone in 2000, but he had a relapse a few years later. So Gottschalk started taking Rebif, giving himself two shots a week until the drug's side effects — severe flulike symptoms for 24 hours — became too much to bear. Next, about once a month for five years, Gottschalk was given an infusion of Tysabri, an even newer M.S. drug. A rare side effect landed him in the hospital in 2010 and almost killed him.
Surfing Facebook one day shortly after the Tysabri scare, Gottschalk learned that an Italian vascular surgeon named Paolo Zamboni had hypothesized that the real cause of M.S. was something called chronic cerebrospinal venous insufficiency, or CCSVI. For decades, doctors have been confident that M.S. comes about because the immune system attacks the brain, though they don't know why it does so. Zamboni contended instead that blocked veins prevent blood from draining from the head, causing iron to back up in the brain and damage nerves that send messages to the body.
Zamboni's first study, published in 2009 in a small neurological journal, purported to find CCSVI in 100 percent of M.S. sufferers at one stage of the disease, and he developed a surgical procedure to treat it: opening the veins that carry blood away from the head with the aim of restoring normal blood flow. This would be done by inflating a small balloon inside the vein to widen the passage, and in rare instances by placing a device to keep it open (as is commonly performed in the arteries of patients with heart disease). Zamboni's study was small, just 65 subjects, and though he had compared them with a control group, he knew which patients had M.S. and which did not. But news of CCSVI traveled quickly, and M.S. patients started seeking diagnostic procedures to see if they had CCSVI, as well as the surgery to treat it.
This article has been revised to reflect the following correction:
Correction: October 29, 2012
An earlier version of this article misstated the surname of a man who underwent what is believed to have been the first surgery in the United States to treat chronic cerebrospinal venous insufficiency (CCSVI). He is Jeff Beal, not Beals.
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