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2002 Article on O.I.


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I found out the DATELINE segment on our illness was in December of 1999. Then I came upon this article about astronauts and OI being a genetic defect.


Paragraph from the article....

Prior to the early 1990s, doctors frequently misdiagnosed OI. "I'm sorry to say that 20 years ago I probably told young women who came to see me about this problem . . . [that] they were deconditioned and they needed to get more exercise," says Robertson. "What changed my view was a finding in the early 1990s that cerebral blood flow, blood flow to the brain, fell more in these patients than in normal subjects. Even though the blood pressure was just as high when they stood, their brain blood flow fell when they stood, more than it should. And that's what keyed me in. We used to think if the pressure was okay when you were standing, your brain would do fine. In this group of patients [ones with OI], that proved not to be the case."

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You think the doctors would understand that by now. It's why we feel so lightheaded or brain-fogged. I also explain a feeling where my head feel like it's not attached to my body sensation...like its kind of floating over me, lol. But I don't mention THAT to my doctor but that goes with the vertigo I sometimes get I think.

I remember once, reading in a medical book used in the early 60's for medical SCHOOL something like: "Many women often experience what they percieve to be pain during menstruation. But we now know this is simply psychological"...or words to that affect. I was reading this old book for amusement when the doctor was out of the office for two weeks on vacation.

I remember him telling us that THEY were taught menstrual cramps and pain 'didn't exist'..though HE always believed the pain was real. But many of his colleagues didn't believe!! Look at how much we have learned of that and much of that was WRONG...not to mention the bizarre endometriosis pain many women get....who would think our innards could travel around but they do.

And if this book was written in the 40's or 50's, look at how many women had had PERIODS for CENTURIES and men still didn't have a clue. Kind of scarey.

And since even the OI specialist would tell a patient it was anxiety. I wish more docs were like the late Dr. Streeten. He studied dysautonomia for over 40 years and always believed it was REAL.

Hope the article helps your doc understand, Morgan.

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