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Ok...NOW I'm fired up....
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<blockquote data-quote="witzend" data-source="post: 152071" data-attributes="member: 99"><p>I don't know that I would write your doctor a letter. I would ask him to add notes of correction - written by you - to your file. If you write him an angry letter, he'll just say you're imbalanced and depressed.</p><p></p><p>I've heard a lot of "you aren't suffering pain, you have depression. Why don't you get out more often, or take up a hobby?" from doctors and neurologists. I absolutely abhor that commercial for that medication that promises to treat your pain <em>and</em> your depression! I'm in pain 24/7, of course I'm not happy go lucky!</p><p></p><p>The worst was a neurologist who has the same type of muscular dystrophy as I do. It's well documented that about 40% of people with our disease have constant chronic pain. It's generally agreed that the disease doesn't <em>cause</em> the pain, but the pain is a result of not being able to move and go about our daily tasks using the proper muscles therefore overusing the wrong muscles. Dr. Ego told me I had to be depressed, because <em>he</em> doesn't have any pain. I sent him copies of studies proving I was right. What a waste of a stamp.</p><p></p><p>I was beyond furious! What a waste of time and money, not to mention I'm not terribly fond of being told that there's nothing wrong with me except I spend too much time feeling sorry for myself. Then when you react with anger and disappointment, you are seeming to fulfill their diagnosis. "See? You're angry and depressed. See a therapist."</p><p></p><p>About 5 years later, Dr. Ego married. There is a prenatal DNA test that can be taken to determine if your child carries this gene. His wife (whom I have met several times at conferences and never told this story to) told me that she wanted to have the prenatal testing done. At the least she wanted to make an informed decision about the child, and to be able to help her child from the get-go if it came about that her child was born with our disease. </p><p></p><p>Now, I have to tell you, that most of us are diagnosis'd at about age 10 - 12 because of another injury or because another family member has it and there are subtle signs. There isn't a definitive progress to this disease that you can count on, no one - even in the same family - gets ill at the same rate as anyone else. About 5% of us have "severe early onset" FSH MD. Dr. Ego's son did. By the time of 18 months, he began to be unable to hold himself upright, and as soon as he could talk he would tell his parents that he was in pain every day. Mrs. Dr. Ego actually told me that she would never have given birth to a child with the disease if she knew then what she knows now.</p><p></p><p>Mrs. Dr. Ego used to call me from time to time to ask advice. I asked her why she didn't get the testing done and educate herself as to what life for her child could be like? She told me, and I quote, "My husband told me it was no big deal. We didn't know that there could be pain, or that it could come on this early."</p><p></p><p><em>HELLO</em>! I sent him studies 5 years earlier! The studies all showed that the earlier the onset, the worse the pain. He's an egomaniac who felt that he was the gold standard and could judge everyone else by his abilities. I never told her what I knew. But I stopped taking her calls. It was too much to listen to her cry about her son, knowing what I know.</p></blockquote><p></p>
[QUOTE="witzend, post: 152071, member: 99"] I don't know that I would write your doctor a letter. I would ask him to add notes of correction - written by you - to your file. If you write him an angry letter, he'll just say you're imbalanced and depressed. I've heard a lot of "you aren't suffering pain, you have depression. Why don't you get out more often, or take up a hobby?" from doctors and neurologists. I absolutely abhor that commercial for that medication that promises to treat your pain [i]and[/i] your depression! I'm in pain 24/7, of course I'm not happy go lucky! The worst was a neurologist who has the same type of muscular dystrophy as I do. It's well documented that about 40% of people with our disease have constant chronic pain. It's generally agreed that the disease doesn't [I]cause[/I] the pain, but the pain is a result of not being able to move and go about our daily tasks using the proper muscles therefore overusing the wrong muscles. Dr. Ego told me I had to be depressed, because [i]he[/i] doesn't have any pain. I sent him copies of studies proving I was right. What a waste of a stamp. I was beyond furious! What a waste of time and money, not to mention I'm not terribly fond of being told that there's nothing wrong with me except I spend too much time feeling sorry for myself. Then when you react with anger and disappointment, you are seeming to fulfill their diagnosis. "See? You're angry and depressed. See a therapist." About 5 years later, Dr. Ego married. There is a prenatal DNA test that can be taken to determine if your child carries this gene. His wife (whom I have met several times at conferences and never told this story to) told me that she wanted to have the prenatal testing done. At the least she wanted to make an informed decision about the child, and to be able to help her child from the get-go if it came about that her child was born with our disease. Now, I have to tell you, that most of us are diagnosis'd at about age 10 - 12 because of another injury or because another family member has it and there are subtle signs. There isn't a definitive progress to this disease that you can count on, no one - even in the same family - gets ill at the same rate as anyone else. About 5% of us have "severe early onset" FSH MD. Dr. Ego's son did. By the time of 18 months, he began to be unable to hold himself upright, and as soon as he could talk he would tell his parents that he was in pain every day. Mrs. Dr. Ego actually told me that she would never have given birth to a child with the disease if she knew then what she knows now. Mrs. Dr. Ego used to call me from time to time to ask advice. I asked her why she didn't get the testing done and educate herself as to what life for her child could be like? She told me, and I quote, "My husband told me it was no big deal. We didn't know that there could be pain, or that it could come on this early." [I]HELLO[/I]! I sent him studies 5 years earlier! The studies all showed that the earlier the onset, the worse the pain. He's an egomaniac who felt that he was the gold standard and could judge everyone else by his abilities. I never told her what I knew. But I stopped taking her calls. It was too much to listen to her cry about her son, knowing what I know. [/QUOTE]
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