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Well, difficult child didn't go to school
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<blockquote data-quote="Marguerite" data-source="post: 504745" data-attributes="member: 1991"><p>Over here, a GP is still the best first (and main) port of call. You need a good GP to be the spider at the centre of your medical web. Let the GP work out who to send you to. For us, an immunologist is still the best bet. Our problem in Sydney is, we had a brilliant specialist who had a huge patient load then he retired. Now there are not enough immunologists to cover the load. He still does research and his name crops up all the time. But no more clinical practice.</p><p></p><p>Next best bet is a GOOD neurologist. You need one who is prepared to say, "I don't know, but I will try to find out." The problem with a lot of neurologists - if they can't measure it or see it on a scan, it doesn't exist. Or you are not their problem. I have a great neuro right now, although he does get off topic too easily. However, he never gives up. My condition is complex but difficult to quantify, but this guy just keeps on plodding.</p><p></p><p>After that - infectious diseases specialist. or for a kid, a pediatrician.</p><p></p><p>But whoever you go for, you need someone who understands CFS and recognises it as a genuine disorder and won't simply take the soft option of "pull yourself together".</p><p></p><p>So back to basics - talk to the GP, preferably one you have history with. If they won't take the issue seriously, then get in touch with a CFS patient support network and ask them for advice on who to see. Get a number of names, don't just take the first one (unless it's the only one). In the meantime do some reading - check the current CDC diagnostic criteria. I believe there are still a few Aussie docs whose work has contributed.</p><p></p><p>Whatever you do, stick with the same docs as far as you can stand it. Do your utmost to avoid appearing to be doctor-shopping, especially if it's for your child. You NEED the history to be continuous, or the wheel keeps getting reinvented. You can also, especially if the child is really ill, face potential accusations of Munchhausen's by proxy. That is far less likely to happen where you have a continuous history.</p><p></p><p>if you want anything more specific, PM me. </p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 504745, member: 1991"] Over here, a GP is still the best first (and main) port of call. You need a good GP to be the spider at the centre of your medical web. Let the GP work out who to send you to. For us, an immunologist is still the best bet. Our problem in Sydney is, we had a brilliant specialist who had a huge patient load then he retired. Now there are not enough immunologists to cover the load. He still does research and his name crops up all the time. But no more clinical practice. Next best bet is a GOOD neurologist. You need one who is prepared to say, "I don't know, but I will try to find out." The problem with a lot of neurologists - if they can't measure it or see it on a scan, it doesn't exist. Or you are not their problem. I have a great neuro right now, although he does get off topic too easily. However, he never gives up. My condition is complex but difficult to quantify, but this guy just keeps on plodding. After that - infectious diseases specialist. or for a kid, a pediatrician. But whoever you go for, you need someone who understands CFS and recognises it as a genuine disorder and won't simply take the soft option of "pull yourself together". So back to basics - talk to the GP, preferably one you have history with. If they won't take the issue seriously, then get in touch with a CFS patient support network and ask them for advice on who to see. Get a number of names, don't just take the first one (unless it's the only one). In the meantime do some reading - check the current CDC diagnostic criteria. I believe there are still a few Aussie docs whose work has contributed. Whatever you do, stick with the same docs as far as you can stand it. Do your utmost to avoid appearing to be doctor-shopping, especially if it's for your child. You NEED the history to be continuous, or the wheel keeps getting reinvented. You can also, especially if the child is really ill, face potential accusations of Munchhausen's by proxy. That is far less likely to happen where you have a continuous history. if you want anything more specific, PM me. Marg [/QUOTE]
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