Thursday, October 6, 2011


Excerpted rom Ting and I
Multiple sclerosis—MS—is believed to be an autoimmune disease, in which the body’s immune system attacks the covering of nerve cells, the myelin sheath, leading to scarring of the sheath and a loss of its primary function, electrical insulation.

Nerves throughout the body, but principally in the spinal cord and brain, can be damaged this way. The damage can affect sensory, motor, or brain nerves, leading to a wide variety of symptoms, from tingling to paralysis to loss of coordination or cognitive skills and sometimes loss of sight and speech. Many cases remain relatively mild, producing annoying but not disabling losses, and not shortening the victims’ lives.

Four types of MS are usually described, but most patients, as did Tina, go from having relapsing-remitting episodes of MS to having a secondary progressive form, with a slow, sometimes very slow, continued loss of function. Our neurologist has speculated that Tina’s immune response may have “burned itself out,” so that the slow healing of the neurological system may lead to gradual improvement. We hope so.

For several weeks when Tina was near 10 years old, she had an episode of blindness, an optical neuritis that might have been a warning sign that she had MS, which is hard to diagnose, because of the wide spectrum of symptoms. MS is rare enough, one per thousand in the U.S., that it can easily be overlooked. It is a heritable vulnerability, with children of MS victims having a 1 percent chance of developing the disorder (about ten times the incidence in the population at large). The likelihood of an identical twin having it is 30 percent, if the other does. Environmental factors also play a role, with children born in sunny climes less likely to develop MS. There is evidence suggesting a connection with vitamin D, as well as sunlight. Tina is mildly allergic to vitamin D, developing an itchy rash from ingestion and even from exposure to sunlight, which generates vitamin D in the exposed skin.

The Epstein-Barr virus, the cause of mononucleosis, not uncommon in children, may trigger the mistaken immune response. Much is still to be discovered.

So far, there is no cure. Various methods of suppressing the immune system reduce the frequency and severity of the attacks, but only imperfectly and at the cost of leaving the patient more susceptible to infections. In 1994, Tina optimistically started one of these drugs, beta interferon; but after a few months the neurologist stopped it when her white blood cell count became dangerously low. Tina found the lump that was a breast cancer shortly thereafter and believes that the immunosuppressive drug caused it. While it is true that immune suppression can allow the development of some cancers, the process takes time, a decade or more, rather than weeks.

The on-again, off-again nature of MS leads to credence in “discoveries” of dubious “cures” that turn out to be just a matter of lucky timing. Special diets, bee venom shots, removal of dental amalgam, and, currently, the surgical enlargement of veins leading from the brain, are among the many remedies that have been proposed and have become fads, but none have proved effective after extensive testing.

When we married, June 1984, the signs of Tina’s MS were virtually invisible, although she did feel more tired than she thought she should. By 1990, she was still able to walk, but only in baby steps; her fatigue had worsened, and she showed some loss of mental clarity.

By 1993, she was using a cane, was barely able to climb stairs, and it was time to move from our duplex. Short-term memory and occasional reasoning losses were noticeable, as well.

During the Ledgewood Commons period, Tina had a severe MS exacerbation, bad enough that she was hospitalized, though I do not remember the symptoms. She was treated with ACTH, a powerful steroidal anti-inflammatory drug, intravenously. The second day of hospitalization, she told me a lurid tale of highly improper activity at the hospital by a neighbor who was a doctor on the staff. I was shocked. Before I lit into the hospital staff, I asked her some more questions, as the story made no sense. None of it made sense. None of it had happened. She was suffering from steroid psychosis, her brain’s overreaction to the drug. Many more strange ideas popped into her head that week. This persisted for a week, a very sad week, as I feared it would not be reversible. It was.

Twenty years later, a milder steroidal treatment (an inhaler) produced initial indications of steroid psychosis, so we discontinued it, and the symptoms faded away.

We visited my mother and sister in Tucson around the spring of 1990. They had a ranch house with a lovely pool. Tina had not been swimming since the previous summer, so she was eager to do so, and she had been an excellent swimmer in the past. I went into the pool with her and was shocked to see her starting to drown. She could no longer swim. True, her gait had gotten a bit worse, but neither of us expected this. What if I had been late in joining her?

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