WHAT A DIFFERENCE A YEAR MAKES
MVP patient David Curtis spent four long years not knowing the cause of his debilitating symptoms.
With diagnosis came a new outlook and an opportunity to help others.
January 4, 1999, is a day David Curtis will remember for a long time. It's the day a doctor put a name to the myriad symptoms that had plagued him for years. "I wouldn't shut up," said Curtis of the day he received his diagnosis. "I thought, 'Finally, I have an answer. This explains it all.'"
"It all" began some four years earlier, in the winter of 1994-95. David was in the U.S. Air Force, in a stressful job with a difficult supervisor, and he began having stomach problems. "The stress really kicked it off," he said. "By the beginning of 1996, I realized something was seriously wrong. I had already been to a specialist (an Air Force doctor), but I wasn't getting any real help.
"It was really frustrating. It seemed like the military doctors had this attitude that they would only put up with so much." When the military doctors couldn't find a medical cause for David's symptoms, they decided to go in a different direction, referring him to a psychiatrist.
"I didn't agree that the problems were psychological, but I went along with it. I gave them the benefit of the doubt, and let them take control of my health," said Curtis. "I was somewhat depressed, but that was simply because I'd been sick for so long. I knew it wasn't my 'real' problem."
The psychiatrist wasn't able to help David with his symptoms - and at one point, even prescribed a drug that caused David's first panic attack. His symptoms continued to worsen. In October 1997, he left the Air Force, having spent two and a half years seriously ill and having lost 50 pounds.
The first few months out of the Air Force, David's symp- toms did lessen a bit, but gradually they returned, and worsened. A panic attack in early 1998 led David to quit his job. "I'd been trying to hide the whole thing - my symptoms, my illness, whatever it was. I became somewhat obsessed with my health. I knew something was wrong, but nobody could find out what that was."
And then David caught a break. He was reading the Sunday Montgomery Advertiser (David and his wife, who is in the Air Force, live near Montgomery, Alabama) one day and came across a short article about an anxiety screening held by a local clinic. He called the phone number in the article and was given the name of an anxiety therapist. He saw that therapist for about six months, and while the therapist wasn't able to help with most of his symptoms, David did get a referral to a panic and phobia self-help support group. There, he met Peggy Batey.
"I have to thank Peggy," said David, "because she was the first person who told me about MVPS. She went over the symptoms with me, and I had them all." Peggy has MVPS herself and is a patient at Birmingham's Mitral Valve Prolapse Center.
David began researching MVPS and took his findings to his general practitioner, asking to be tested.
"When I told him I wanted to be tested, he just sort of said 'What?!' I told him, 'Look at my records.' He made a referral to a cardiologist that day."
That cardiologist didn't find anything and sent David home with a clean bill of health. But David persisted, and at Peggy Batey's encouragement obtained a referral to the Mitral Valve Prolapse Center in Birmingham. And on January 4, 1999, David received his diagnosis.
BLESSING IN DISGUISE
To David Curtis, who had spent over four years of his life seriously ill, the diagnosis was a major breakthrough. It was also a blessing in disguise for several members of his family.
"Looking back, I'd had a lot of the symptoms practically my whole life, starting when I was about 12. The stress I experienced in the Air Force sent the symptoms to the next level, but they'd been there all along," he said.
"I thought a lot of the things I experienced were normal, because my dad had them, too."
Once David realized all those "normal" occurrences were actually MVPS symptoms, he talked about them with his father and other relatives. "The whole time I was sick, I didn't want to talk about it. I didn't do much, didn't go out. But once I was diagnosed, I thought, 'Well, if anyone else has symptoms, I might be able to help them figure it out,'" he said.
To date, two members of David's family on his father's side - his father and a cousin - have been diagnosed with MVPS, and three other cousins are looking into their own symptoms. Until he started relating his own experiences, David said, he hadn't known some of his relatives were suffering as much as they were. But by sharing his experiences with them, he's helped them make important changes in their lives.
Most importantly, David said, his own daughter won't have to experience the severe symptoms he did. "I worry about my two-year-old daughter, because not only do I have MVPS, but my wife and her mother have it, too.
"But my daughter won't have to go through what I did, because my wife and I know what to do. Already, my daughter drinks some milk, some juice, but mostly water. She's on almost the same diet I'm on, and will continue to be, with no caffeine and limited sugar.
"I grew up on candy bars and soda, and when it came time to change my diet because of MVPS, sugar was the hardest thing to kick, even harder than smoking (and I'd smoked a pack a day for five years). But my daughter will get to start off right."
David also encourages others outside his family to seek treatment for MVPS/dysautonomia symptoms. One place he does that is at monthly meetings of the support group where he met Peggy Batey.
"The first time I went," David laughs, "I made my wife go with me. I was nervous about going, and I had all these questions.
"Now, I'm one of the regulars. I share my stories and help answer questions for others."
TAKING CONTROL
Despite David's guidance, some of his relatives are finding it difficult to obtain treatment - because they can't find doctors who understand. "I think some doctors who aren't familiar with MVPS don't know how to deal with well-informed patients, and some of my family members are finding resistance because of that," he said.
But that's exactly the kind of patient David Curtis has become - well informed, persistent, determined to manage his own health care.
"My approach to my health is partly just the way I am - my own intuition and curiosity. . . . I wanted to know more about my condition - what percentage of people have it, whether it's hereditary. But what got me to pick up the books in the first place was my experience with the military doctors and their lack of knowledge.
"What's made me keep pursuing the reading and research is that I'm no longer satisfied with doctors just prescribing a drug and sending me home. I've been lucky recently, because the GP who helped me get diagnosed really seems to respect that I've read up on my condition," he continued.
David's information about MVPS comes from a variety of sources. He has three shelves of medical books in his den, along with several boxes of pamphlets and photocopied material.
He pulls a good deal of information from the Internet, but advises, "You have to distinguish quality - you have to check where it's coming from, to distinguish fact from fiction."
He also stays in contact with the staff of the Mitral Valve Prolapse Center. "I get articles from the center - the whole staff up there is great," he said. "And their literature is wonderful. I send it to all my relatives."
"Dr. Watkins, who diagnosed me, is the first doctor I've met who, when he talks, I listen," said David.
"The people at the Mitral Valve Prolapse Center restored my faith in the medical profession. I'd gotten the runaround so much up to that point that I didn't trust doctors at all."
Of all the people who have helped David in his recovery, however, he feels he owes a special debt to his wife: "I relied on my wife, Brenda, for almost everything for a long time. She's made many sacrifices for me, and I can't imagine recovering from this without her. Although she's never experienced the severe symptoms I have, having her by my side eased my fears many times.
"Regardless of whatever the future might hold for us, I want her to know that I will always love her."
NEW GOALS
Now that he's reached a point where his symptoms are merely annoying rather than crippling, David's immediate plans include college.
"Last October," said David, "my psychiatrist was on the verge of admitting me to a psychiatric ward for panic disorder. My panic attacks were way out of hand and I was seriously depressed.
"This October," said David, "I'm mid-way through my first quarter of college, I work 25 hours a week, and I've had only one panic attack since starting treatment for MVPS in January. I feel like a whole different person.
"I've wanted to go to college for the longest time, but I had to keep putting it off. I've waited three and a half, four years for this. I know what I want to do, and I'm ready to go for it."
Along with that determination, there's also a bit of satisfaction in having survived a health care system that couldn't help him. Says David, "My condition - and the problems I had finding treatment - took over five or six years of my life. But in the end, I was right."
Background information for this article came from CNN’s Website, cnn.com, and from "Trends in Teen Nutrition," an article on the International Food Information Council’s Website, ificinfo.health.org
.
|
