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Furious and trying not to cry because i am so da.mn mad
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<blockquote data-quote="susiestar" data-source="post: 391132" data-attributes="member: 1233"><p>I cannot find a doctor to do the blood test for Lyme, or anything else.</p><p> </p><p>As for fibro, it causes depression and anxiety rather than being caused by it. I know a LOT of women who NEVER had depression or anxiety before they got sick with fibro. NO history of either in their families as far back as they have found. One of them is very into geneology (sp?) and has traced her family back a long long way. Her parents are still alive and they know of zero relatives who had ANY symptoms of either, though of course back then no one was diagnosis'd unless it was severe. Either way, fibro is related to those things, but treatment for anxiety and depression simply do NOT cure or fix or even deal with fibro. Cymbalta's effect on fibro is not well understood and it does NOT help a significant number of patients. It is thought that fibro is a nerve disorder, not a mental health disorder. Of course the "best" docs to treat this type of problem, given what is known about what truly goes on with fibro, is a neurologist. I have yet to meet a neuro who even recognizes it as a disease, in spite of having MANY rheumatologists and immunologists and general practice and family practice and internal medicine docs each try to refer me to a neuro for fibro treatment. Over twenty four years I have had these docs, some of them very up on the latest research on fibro, try to refer me to a neuro for treatment of fibro. Neuros want things that show on MRIs or EEGs. Period as far as I can see. </p><p> </p><p>Sara PA (old member here, some will remember her) often said that EEGs only capture seizures in about 20% of the brain. Just because a doctor cannot see a seizure on an EEG does NOT mean that seizures are not happening. OFTEN the docs are wrong because the seizures, which can cause all kinds of difficult child behaviors and many many other things, are in parts of the brain that they can NOT test, analyze or figure out. Instead of admitting this, neuros seem to fall back on the "I am the doctor and I am the ONLY one who knows what is right so you MUST bow down and take my words as the GOSPEL." and they tell male patients that it isn't happening and female patients that it is all in their heads, aka anxiety and depression.</p><p> </p><p>I was completely appalled at how out of touch with current research on real disorders like fibro and PANDAS this guy was. Not just current research, research from fifteen years ago! He may be the "expert" in pediatrician movement disorders for a big part of the country, but I am unimpressed with his knowledge and behavior.</p><p> </p><p>I am ****** that for a WEEK my daughter wanted to puke most of every day, did NOT eat much, or in a healthy way because her stomach was upset and they would not even let her have prilosec, saying the nausea is from the anxiety and depression and I need to "not feed into her problems by giving her medication for it". Gee, do y'all think 5 months taking 5 aleve OTC tablets (insurance would not cover the 1000 mg naproxen he wanted so he upped it to 1100mg or 5 (220mg) OTC tablets) three times a day would mess up her digestive system? Then lowering it to 3 tabs 3 times a day and insisting she stay on it even when we asked to take her off it for the last 3-4 months would keep it upset and even make it worse?</p><p> </p><p>The nurses seemed to "get" that one, but until last night not a single one of them made any notes about it or spoke to anyone who might make notes about it. Even the nurse doing the intake and the one who came in and did the history did NOT write this down. Not even a brief note that she has had stomach problems since she was put on a large dose of aleve. </p><p> </p><p>I think what upsets me even more is that about half of what they said they were going to do, that it was CRUCIAL to get done, was just ignored. She was supposed to have in depth, intense biofeedback, complete neuropsychologist testing at least 3 hours each day (per the intake instructions and what I was told by the doctor and by the nurses who did the intake), AND a psychology AND psychiatry evaluation. She had the EEG and 2 short sessions of biofeedback and hypnosis, a 30 min PT consult and a 30 min Occupational Therapist (OT) consult. Since she can dress herself, walk by herself, write a very neat, intelligent and interesting paragraph, then this MUST be anxiety and depression. We had NO anything from a neuropsychologist, a therapist or a psychiatrist. When did a neuro become able to give a qualified psychiatry evaluation? Gee, he didn't. They did have the pain doctor come in, but since Jess was "ok" for the 2-3 mins she spent in the room then she wasn't "needed". </p><p> </p><p>I am incredibly sad and disillusioned. It will take me a couple of days, but I will just search harder and fight more to figure out what my child's problem really is. In the meantime, I will make sure she learns what she needs to pass her GED so she can go to college. There is NO WAY she can go to regular high school, and NO WAY that she will set foot in our alternative school - not when the principal is none other than the sp ed teacher who fed all Wiz' problems until he went nuts.</p><p> </p><p>Sorry this is so long. I know you are all here for us, and it means more than I can say. I really needed to vent, so thanks for reading it all.</p></blockquote><p></p>
[QUOTE="susiestar, post: 391132, member: 1233"] I cannot find a doctor to do the blood test for Lyme, or anything else. As for fibro, it causes depression and anxiety rather than being caused by it. I know a LOT of women who NEVER had depression or anxiety before they got sick with fibro. NO history of either in their families as far back as they have found. One of them is very into geneology (sp?) and has traced her family back a long long way. Her parents are still alive and they know of zero relatives who had ANY symptoms of either, though of course back then no one was diagnosis'd unless it was severe. Either way, fibro is related to those things, but treatment for anxiety and depression simply do NOT cure or fix or even deal with fibro. Cymbalta's effect on fibro is not well understood and it does NOT help a significant number of patients. It is thought that fibro is a nerve disorder, not a mental health disorder. Of course the "best" docs to treat this type of problem, given what is known about what truly goes on with fibro, is a neurologist. I have yet to meet a neuro who even recognizes it as a disease, in spite of having MANY rheumatologists and immunologists and general practice and family practice and internal medicine docs each try to refer me to a neuro for fibro treatment. Over twenty four years I have had these docs, some of them very up on the latest research on fibro, try to refer me to a neuro for treatment of fibro. Neuros want things that show on MRIs or EEGs. Period as far as I can see. Sara PA (old member here, some will remember her) often said that EEGs only capture seizures in about 20% of the brain. Just because a doctor cannot see a seizure on an EEG does NOT mean that seizures are not happening. OFTEN the docs are wrong because the seizures, which can cause all kinds of difficult child behaviors and many many other things, are in parts of the brain that they can NOT test, analyze or figure out. Instead of admitting this, neuros seem to fall back on the "I am the doctor and I am the ONLY one who knows what is right so you MUST bow down and take my words as the GOSPEL." and they tell male patients that it isn't happening and female patients that it is all in their heads, aka anxiety and depression. I was completely appalled at how out of touch with current research on real disorders like fibro and PANDAS this guy was. Not just current research, research from fifteen years ago! He may be the "expert" in pediatrician movement disorders for a big part of the country, but I am unimpressed with his knowledge and behavior. I am ****** that for a WEEK my daughter wanted to puke most of every day, did NOT eat much, or in a healthy way because her stomach was upset and they would not even let her have prilosec, saying the nausea is from the anxiety and depression and I need to "not feed into her problems by giving her medication for it". Gee, do y'all think 5 months taking 5 aleve OTC tablets (insurance would not cover the 1000 mg naproxen he wanted so he upped it to 1100mg or 5 (220mg) OTC tablets) three times a day would mess up her digestive system? Then lowering it to 3 tabs 3 times a day and insisting she stay on it even when we asked to take her off it for the last 3-4 months would keep it upset and even make it worse? The nurses seemed to "get" that one, but until last night not a single one of them made any notes about it or spoke to anyone who might make notes about it. Even the nurse doing the intake and the one who came in and did the history did NOT write this down. Not even a brief note that she has had stomach problems since she was put on a large dose of aleve. I think what upsets me even more is that about half of what they said they were going to do, that it was CRUCIAL to get done, was just ignored. She was supposed to have in depth, intense biofeedback, complete neuropsychologist testing at least 3 hours each day (per the intake instructions and what I was told by the doctor and by the nurses who did the intake), AND a psychology AND psychiatry evaluation. She had the EEG and 2 short sessions of biofeedback and hypnosis, a 30 min PT consult and a 30 min Occupational Therapist (OT) consult. Since she can dress herself, walk by herself, write a very neat, intelligent and interesting paragraph, then this MUST be anxiety and depression. We had NO anything from a neuropsychologist, a therapist or a psychiatrist. When did a neuro become able to give a qualified psychiatry evaluation? Gee, he didn't. They did have the pain doctor come in, but since Jess was "ok" for the 2-3 mins she spent in the room then she wasn't "needed". I am incredibly sad and disillusioned. It will take me a couple of days, but I will just search harder and fight more to figure out what my child's problem really is. In the meantime, I will make sure she learns what she needs to pass her GED so she can go to college. There is NO WAY she can go to regular high school, and NO WAY that she will set foot in our alternative school - not when the principal is none other than the sp ed teacher who fed all Wiz' problems until he went nuts. Sorry this is so long. I know you are all here for us, and it means more than I can say. I really needed to vent, so thanks for reading it all. [/QUOTE]
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