When the Diagnosis Is Multiple Sclerosis: Help, Hope, and Insights from an Affected Physician - Original PDF
نویسندگان: Kym Orsetti Furney M.D.
خلاصه: THE NAME , “MULTIPLE SCLEROSIS ” I have a very hard time with the name of this illness—“multiple sclerosis.” It has such a horrific sound to it. Even after seven years, I rarely say the words multiple sclerosis aloud. I much prefer the more appealing sound of MS. In speaking to others with multiple sclerosis (MS), I have learned that I am not alone with this preference. At the time I was diagnosed, I was somewhat familiar with this illness, hav- ing intermittently cared for multiple sclerosis patients in the hospital. Most of the patients I had seen were diagnosed with MS in the 1970s or 1980s, a time when medication for relapse prevention was not yet available. Others, who were frequently in the hospital, had a variant of MS called “primary progressive multiple sclerosis,” which can lead to significant disability fairly quickly. As a physician, I thought their situations were so very sad, as many patients had developed poor functioning of their arms, legs, bladder, or speech. I rarely had the opportunity to see the MS patients who had very little disability, since they were seen in the outpatient setting. So when I finally had it con- firmed, that yes, these bizarre symptoms I had been having were in fact due to multiple sclerosis, I conjured up the worst possible images of what might happen to me. While many of you may not have had the opportunity to meet patients with more advanced stages of MS, I suspect that your reaction to the diagnosis of MS may have been quite similar to mine. Many people still carry an image of multiple sclerosis as an illness that picks an individual out of the prime of his or her life, and leaves that person wheelchair bound and severely disabled. Fortunately, for the majority of women and men who are newly diagnosed with relapsing–remitting MS in the new millennium, this is not an inevitable outcome. And yet, while we know that medications now exist to prevent relapses, this knowledge does not necessarily make the initial journey any 2 When the Diagnosis Is Multiple Sclerosis easier. We did not sign up for this club. We did not ask to play this game. The anger, the grief, and the uncertainty about the future can be overwhelming. Give yourself time. It will be possible to feel in control again.