When doctors don't listen to patients (inspired by MM's thread)

Discussion in 'The Watercooler' started by MidwestMom, Sep 1, 2012.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Anyone have a scary story about a time when a doctor refused to listen to you or somebody you know about medication? Or anything? I have such a story and will share it. Don't know if anyone is interested, but heck then it's a vent :) This is about a friend of a friend (got it?) that I tried to help because friend doesn't drive. So I got to know HER friend.

    This poor lady had been put on depression medication. According to my friend, who had gone away for the cold winter, when she had come back, she had visited her friend, and friend had deteriorated to an alarming degree. They were thinking she shouldn't live alone anymore and could be suffering from Alzheimers. I went to the psychiatrist with her and my friend and the doctor dismissed my comment that her shaking, forgetfulness, bad stomach and weight loss could be related to the medications he'd prescribed (she was taking Prozac and Lorazapan.) She was in the ER every other night with "shakes" and was barely coherant and everyone from the ambulance drivers to the ER staff to the doctor was treating her as if she were just a nutty old lady who was losing her marbles.

    Having had horrendous experience on certain medications myself, Prozac being one, I kept after her to get her doctor to wean her off the medication. My friend told me that she had been normal before the medications had been started. The doctor wouldn't do it. He upped the dose. She kept shaking, vomitting, going to ER. She was incoherent. We took her to a GP just to make sure she was healthy. The GP was nice, but also treated her like a dotty old lady and said she was fine and that she couldn't c hange the medications and to go back to her psychiatrist. So we took her back to psychiatrist. He agreed to change her antidepressant to paroxatine. She felt a little bit better, but still shook. The psychiatrist wanted to send her for a test for Parkinsen's Disease. I kept telling her maybe she should find somebody to wean her off the medications, but she wasn't in any shape to make any decisions. She ended up taking a bottle of pills, trying to kill herself, and ended up in a psychiatric hospital. Didn't hear about her for a long time.

    Fast forward. My friend called me about a month later saying this friend of hers had stopped over. She was off all of her medication. She was not shaking. She had no stomach cramps. She was totally lucid. She was calm and collected. She spoke to me on the phone and thanked me for helping her. Literally, there were no symptoms of her complaints when she had been on Prozac at all.

    I get really angry at doctors who treat those who have had depression or other mental health issues like idiots who don't know their own bodies. This lady was well on the way to a nursing home, her life destroyed. I have had this happen to me (not being believed) but I'm the type who will walk away from a doctor who isn't helping me and find another one. Not everybody is like that. We are taught to trust our doctors.

    One last little story. This was about Sonic and a goofy therapist we saw when he was about four. Sonic wasn't speaking yet and was very hyper. We were told, "You can't help him. He will ALWAYS be like this. There is nothing we can do for THESE kids." I still am so angry when I think about what he said that I feel like sending him a letter about how Sonic is doing today. I don't have room to talk about the doctor who insisted Sonic had bipolar...lol. He didn't believe he was wrong even three years later when I told him that, off medications, Sonic was happy as a lark.

    I worked for doctors. It is really a crapshoot whether or n Occupational Therapist (OT) you get one who is good or who is dismissive. And when it comes to psychiatrists and therapists, well, this is NOT an exact science. So many of them, however, are POSITIVE that they have nailed the problem and often prescribe bad medications. Then they blame the patient for getting worse or they INCREASE the doses or ADD medications. I've a veteran of psychiatrists and therapists since I've been 23 (I will be 59 on Tuesday). medications saved my life, but the RIGHT medications only. And many psychiatrists and therapists do treat you like you are just plain nuts if you tell them that their medication of choice or their therapy of choice isn't working or is making you worse. Experience talking. OK, rant over :) Sorry!
  2. susiestar

    susiestar Roll With It

    MWM, I have a LOT of stories about docs/tdocs/psychiatrists who simply refuse to listen or admit that what they have done is the cause of the problem.

    When I was in my teens I began to have a lot of muscle and joint pain and muscle spasms so bad I couldn't move. It was clear that something was really wrong. My mom developed heatlh issues at the same time. We found a specialist who treated us both and for a while we really trusted him. After a bunch of tests this dr told us that I had ankylosing spondylitis and he proved this by showing test results that said I had the gene linked to that disease and xrays showing that I had square vertebrae - not the normal shape. MY name was on those xrays.

    This doctor had me on medications that we later learned would have been serious over-prescribing for a 350 lb male and I was an 80 lb female during puberty. Mom was told to take aspirin until her ears rang - his exact words!!! When I went to college the health ctr doctor was HORRIFIED by the medications I was on and the levels of them (super high levels of steroids, NSAIDS, and a lot of other things). I was sent to a pediatrician endocrinologist because I was so small and no matter what could not gain weight.
    when the docs at college tried to get the xrays and lab tests from the doctor back home they couldn't get them. Lots of reasons were given, many in person to my mother (still his patient), but those xrays were NEVER sent to my new docs. Xrays taken again showed normal vertebrae, NOT squared ones. I know, for a complete certainty, that MY name was on those xrays but they could NOT have been mine.

    I have had ulcers and many many other problems from the medications I was on all during puberty. My mother had to have part of her stomach removed due to the amt of aspirin and other harsh medications he put her on. he NEVER treated her stomach problems or acted like they were a problem though she complained at EVERY appointment about her stomach hurting and other classic signs of ulcers. The doctor had posters in his exam rooms saying to talk to your doctor if you have various stomach problems - but he never did ANYTHING when you told him.

    That was the FIRST time I had docs refuse to listen, and the first time that records disappeared or were altered to CYA the doctor.

    I have had at least ten psychiatrists tell us Wiz was bipolar but NONE would even discuss the treatment plan that has the patient on mood stabs and maybe an antipsychotic until they are stable and then treats the other symptoms if they are still there once moods are stable. All I had to do to get the bipolar diagnosis removed was to INSIST that they follow that protocol. They didn't want to take him off the antidepressants and stimulant medications even though they would make him cycle if he was bipolar.

    With Jess we have docs insisting that since the EEG shows no seizures then it is impossible for her to have them. One neuro has written papers and journal articles about how eegs do NOT catch most seizures and patient history and parent's reports are the best ways to diagnosis many seizures. I took HIS article to an appointment and asked if this was the case then why didn't he believe that seh was having seizures given the things that sound a whole lot like them? He never did answer and refused to make any appts for us after that.

    J is caught in a no-win situation. the neurologist and neuropsychologist say that she has conversion disorder (brain doing this due to psychological problems) but four tdocs and 2 psychiatrists say that it is NOT that, that the problems are medical and not due to conversion. So NONE of the docs/tdocs/psychiatrists will treat the problems because they ALL say it isn't due to their area of expertise. I find it crazy and ridiculous.

    Even more annoying, in my opinion, are the docs who diagnosis every patient they see with the same thing regardless of symptoms. I had one doctor as a teen who diagnosis'd over 3 dozen kids in my jr high with mono. Some had the flu, some had other problems, I had chicken pox and was totally covered in them three hours after he diagnosis'd me. I think a great many psychiatrists and tdocs have some disorder they prefer to treat or they specialize in and they diagnosis the majority of their patients iwth that diagnosis regardless of the entire set of symptoms. I don't know how to fix it, but I DO know it happens.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Oh, Susie, that's HORRIBLE. I'm so sorry. Poor, poor Jess!

    I'm surprised more people don't have stories!
  4. AnnieO

    AnnieO Shooting from the Hip

    I have lots of little things... The kids, not me. My GP is an absolute gem, I don't know how I lucked out with him, but he listens.

    The kids. Whew. Let's see. One had Onyxx on Seroquel, Zoloft and Wellbutrin at the same time, with Benadryl for sleep. Well, the Seroquel website (at that time) said NOT to EVER Rx it and Zoloft together... And what was with the Zoloft AND Wellbutrin... And Benadryl activates her - bouncing off the walls type activation, plus hallucinations. Her old pediatrician put her on 2500mg naproxen a day - not PRN - for headaches. Didn't agree that her sleep cycle might have to do with it. Said on the days they got really bad to add up to 1000mg ibuprofen or 1500mg acetominophen. Then the recent one who kept upping her dose of Seroquel for SLEEP purposes. (3mg Invega works better in my opinion than the 400mg Seroquel... But what would I know?)

    Jett... Same old pediatrician put him on 9mg Concerta for ADHD. The questionnaires we filled out, and the teacher's, matched - bio's were the odd one out, looked like the poster child. That turned him into a brat, so then it was 18mg, then 27mg, then 54mg - he just got worse and worse, and when he crashed he urinated all over everything because he could not wake up. New pediatrician helped us wean him off, and he is MUCH better without. Mild ADHD sure, but Concerta wasn't it for him. And then there was the neuropsychologist who diagnosis'd him with "severe Fetal Alcohol Syndrome (FAS)". Again, mild, perhaps. But, all of the facial indicators that Jett displays and they noted... Could also be due to his being 1/3 Asian. He does have memory issues, but "severe Fetal Alcohol Syndrome (FAS)" - not from everything I've read. Most everyone who has met him, who has Autism Spectrum Disorders (ASD) kids thinks he is on the spectrum... We did get a Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis at least. But we are also told he is NOT dyslexic, and, well, yes, he is. One, runs in the family, and two, they are basing it on words he has sight-memorized - not new words.

    husband's docs at the VA are about useless. He has issues with his left shoulder and neck, plus testicular neuroma - one of the docs told him there was no such thing as testicular neuroma. Well, if there are nerves, neuroma's a possibility... Ugh. So they put him on lots of medications which tear up his gut, but they can't find anything wrong with his stomach. Umm.
  5. Hound dog

    Hound dog Nana's are Beautiful

    If I told you stories of docs not listening, you'd totally get why I'm never anxious to go to a doctor/ER/hospital. I could literally write a best seller on Travis alone, let alone myself, and we both nearly lost our lives due to it several times. This is why on the rare occasion I find a doctor who listens to what comes out of my mouth and considers it while examining me, that I don't care if they're super brilliant, I hold on to them for all their worth. My current fam doctor is that way. Travis' doctor for the SSDI exam was that way and if he doesn't want to go to my fam doctor, I'll take him to that guy for that reason.

    I realized quite early on that my kidney diseases are unusual/rare, especially to have started in one so young at the time of diagnosis. I realized long ago that out living your prognosis makes medical personnel suspicious of those dxes. The longer you out live them, the worse the battle to get them to believe you have those dxes and they're accurate. For the past decade, I've been forced to "prove" I have what I have. (cuz you know taking script strength vitamin and a super strong water pill twice a day I do just for kicks I guess omg)

    My first visit to my nephrologist.........he didn't believe a word that came out of my mouth as far as dxes goes until I started showing him scars. Then the only one he refused to believe was the glomeralsclerosis (sp is off not enough coffee). Now that was somewhat understandable as it's the one that throws them. It's usually a disease that results as an end stage of other renal diseases. My case is rare (actually the first known and documented) because it was my first diagnosis with the other dxes branching off as a result of IT, instead of the other way around. The doctor literally mocked me over it. Then out right called me a liar. Then......when it came to the lasix told me I didn't need it while stating my water retention, which was really severe that first visit, was weight, not fluid. I'd have dropped him at that very moment if not for the fact he was the ONLY nephrologist in the entire area. We argued. It wasn't pretty because I don't back down. Docs don't intimidate me in the slightest. He finally gave in and gave me the script for the lasix........and then did a battery of blood / urine test to prove my lies. omg He was downright rude and insulting.

    Next visit he was contrite and apologetic. Having my script for the lasix back I "lost" 25 lbs in 7 days without doing a single thing. This weight was in my stomach where I tend to hold water first (if it goes to my hands, face, ankles, feet I'm in serious trouble) He had blamed my 9 month gone looking belly as "fat" weight, as in I eat too many fatty foods when I rarely eat anything fatty. He ate those words the first minutes of the 2nd office visit. Then, he had to apologize for not believing me about dxes because the blood / urine tests were so horrible that it downright stunned him. I tend to look "healthy" even when deathly ill. (not a good trait to have) He was shocked I was able to crawl out of bed to get to the appointment. lol Only thing that continued to baffle him was how on earth I got the glomeralsclerosis FIRST, and well heck, I can't fault him for that, the doctor who diagnosed it was anal retentive over the diagnosis and worked day and night for 3-4 plus years searching the country then the globe for another similar case to compare notes on treatment. He never found anyone.

    A few years later when I had my heart attack and did the follow up with the cardio, the witch with a capitol B thought she was going to pull the same thing. husband was very upset when after 10 mins of her nonsense I simply got up and walked out of the appointment telling her that I'd next see her again when she specialized in renal disorders but until then she could go straight to hades. I refused to go back and have not seen another cardio since.

    I follow the diet given to me by the nephrologist in hopes of putting off dialysis as long as possible. Because when he saw me 10 yrs ago I was riding the line. I'm probably over that line and have been for a while now, at least I won't be surprised to find out I am given symptoms over the past 2 or so years. With chronic renal failure, you of course have good days and bad days and very bad days. Cardio had refused to believe me based on blood results by a low quality lab (any doctor in this area worth their diploma sends blood/urine to cincy or dayton labs) and either the results were inaccurate or they caught me on a good day. Given the way I was feeling that day, it was probably both. But you don't attempt to toss out dxes not in your expertise that a patient has had for 20 plus years simply based on a single blood test. That is absurd, a malpractice suit waiting to happen. And she has since been sued a few times. Go figure.

    When Travis got his polycythemia diagnosis, it was the first time I didn't have to fight for months or years to be listened to, which is odd because I took him to a neurologist.....because the boy had had an obvious stroke. doctor listened, said not a big deal to check even if it was a long shot as the disorder is very rare and basically unheard of in one so young anyway, did the blood tests, did them 3 times to confirm and was as amazed as I was that is what the kid has. It's since been confirmed via a dna test for the gene and a bone marrow test. I've literally had to fight for ever single d@mn diagnosis the boy has for years. Sad thing is that for many, they were obvious dxes that docs should NOT have missed over and over again.

    Medical schools would scare you. Students are not actually taught to listen to their patients anymore. They're taught not to believe their patients either due to stupidity (I'm serious) or because they're probably drug seeking. It's ridiculous. Of course some schools are worse about this than others.

    When they don't listen to patients it is bad. When they refuse to listen to nurses who are caring for that patient (and therefore tying everything going on together), even when that nurse has far more experience than they do, it can be terrifying. easy child has flat out refused to follow doctor orders many many times simply because it puts her patient's lives in danger, she's had to be backed up by her charge nurse and nurse manager in order to finally bully the doctor into listening to what they were saying. She's had to literally "coach" residents on drugs / treatments that need to be ordered for certain critically ill patients to the point where she's stopped because it makes her want to strangle them. This is in a cardiac ICU folks.

    When you start cranking out for quantity, quality goes down. It's not just with docs, but we've seen the same thing with nurses too.

    So if you don't understand something, don't let the doctor "dismiss" you until you're clear on it regardless of his/her attitude. You're paying them, not the other way around. Don't be afraid to ask as many questions as needed to understand and make them stand there and explain it in terms you can understand. If they won't listen, make them listen or dump them and find someone who will. There is a current over abundance of docs in just about every specialty and fam practice, so you will find one eventually that does listen and take you seriously. You can refuse any medical treatment. So consent to nothing you don't fully understand the pros and cons. Docs are NOT all knowing. They make mistakes, and do so fairly often. A good doctor can admit this. Avoid any that have an attitude of I Know Best. If you don't agree with them, get a 2nd opinion, a 3rd, a 4th if needed. If doctor objects, dump him so fast his head will swim. (totally serious here, a doctor should welcome a 2nd opinion)

    I have found I can weed out most cruddy docs simply with my attitude alone, what that doesn't accomplish my knowledge takes care of. They won't like me right off and their attitude will surface and I drop them or refuse to let them treat me and force them to give me someone else. (latter is in hospital, you can fire a doctor at any time FYI) And I have several times. Once because I was near death in acute renal failure and the idiot doctor treating me at the time was determined it was somehow my stomach even though not a single test was backing him up........meanwhile my blood pressure was through the roof, I looked like an umpa lumpa girl, my heart rate alone was at 200 plus and I fired his rear on the spot and demanded another doctor.......whom they yanked from ICU and was livid at the other doctor for nearly killing me, treated me properly and I went home 3 days later. omg So please, never be afraid to stand up for yourself. I don't care if it makes you look like a "bad" patient or whatever. You are and always will be your best advocate.

    I'm climbing off my soap box. I think I started that book even though i didn't mean to. lol
  6. PlainJane

    PlainJane Every dog has his day....

    Ahh, I can really see both sides of the story here. I have been on the patient end of a less than competent doctor, and on the provider end of an unreasonable, ridiculous patient.
    On the patient end, I rarely run into issue, because I'm a nurse, so when I communicate with doctors, I am pretty much giving "report" about myself. I know how to give report clearly, effectly, and how to focus on important issues and what "complaints" will gentley lead my doctor to the treatment I'd like, if its a case where I kind of have something in mind for treatment. Most docs, if the patient communicates clearly, POLITELY and in an organized fashion, will be fairly accurate with diagnosis and tx. However, many patients don't. They ramble. They add in information that they *think* is importnat, but its not. And they confuse being an informed, involved patient (which is good) with being doctors themselves.
    No profession is immune to less than ideal professionals. I've dealt with doctors both as a nurse and a patient that are just not good at what they do. They are not stupid. Often patients also confuse stupid with just not caring. Rest assure, those doctors are smart. They just don't care what you have to say, either because they dislike their job or their personality is just one of being a jerk. lol
    I've have a few times where I felt that the doctor I was dealing with was being very "relaxed" with my treatment (I have a few things here and there to deal with) but its not that they weren't listening, its just that I prefer a more aggressive approach to various issues. I've also found that arguing or getting an attitude with them accomplishes nothing. If they make it clear they are not going to do XYZ and I want XYZ, I thank them and find another doctor. If you've stated your case reasonabley and clearly and your doctor is still refusing to take the method of management and treatment you want, then all the attitude is not going to change their mind. I've found that patients that feel the need to argue with doctors are more about proving that the doctor isn't "better than them" rather than about their treatment. Its an insecurity, even if they don't see it. (Unless for some reason you are unable to go to another doctor. That's obviously a different story)

    I have found that the majority of doctors are pretty good, but of course they are human. In my experience, patients that have a long list of doctors they didn't get along with are difficult patients. It just like people that have almost no friends, but think its everybody else. On the other hand, its I've found even the nicest patients have at least one story of some a-hole doctor that blew them off when it was something important.
    Its always good to be active in your care, and stay informed. Doctors have lots of patients, but you only have one; you.

    Hound Dog, where did you get your opinion on medical schools? I mean to make a broad statement like that without having researched the educational philosophy of the majority of medial schools, is well, hog wash. Sorry but I call it as I see it. My opinion is what I know from working with many doctors, and being married to one. And your opinion couldn;t be more wrong. If anything the younger docs often comment on the old school docs being from a day when patients did not have a say. The new philosophies (in the north east anyway, where some of the top medical schools are) are that the patient and doctor are parteners in healthcare. These new docs are taught that the number one reason people sue (and this is true, you can look this up) is because they feel dismissed by their doctor, NOT because of medical error...docs are being taught to keep their patients happy and listen to them to avoid lawsuits. This is the new age of medicine.

    Also the quality/quanity thing doesn't apply to us. We aren't car parts. And we take the same amount of time in schooling, if anything the time in school is getting longer and longer. If anything the standards we (nurse and docs) must satisfy has increased, but now we have more and more patients, with more and more demands. People go on google and spend hours reading about their one issue. Then they go into an ER and get annoyed when the doctor there who is a generalist doesn't have this specific detailed knowledge...because that doctor has SO MUCH to learn, and if he or she had the time to read about that one issue for hours and hours like the patient, then that would be great, but that's not real life. We are human, not computers. And tell your nurse friend that nurses have been coaching residents long before she or I were nurses! lol its not some new thing, just because you are just hearing about it. I know many nurses that have been doing this since the 60's (some retired now) and I've worked in teaching hospitals and for many moons experienced nurses have guided residents! They are called teaching hospital for a reason. You know what they say, don't go into the hospital in June!! (That when all the new residents start)

    One time I had a patient's family ask me about one of *her* medications (not my patient, the family member, who is not my patient) and it was some odd medication that is not typically given. I'd barely heard of it, let alone did I know the specifics of it. I told her, I didn't know but I could look it up for her. Well, her reply was some snotty somment about how I should know...I went to my bag, got my 2 inch think drug book, brought it back and dropped it in her lap. I told her if I could memorize every drug in here, plus all the interactions, side effects, and other info...then I wouldn't be here being talked down to by her, but that I'd probably be employed with the government as some super intelligence personel...Pts can be very rude and demanding. And sometimes they need to remember not to treat healthcare workers like ****. People even *brag* about it. They are proud of themselves for arguing and talking nasty to doctors. I find that disgusting.

    Are some doctors jerks. Yes. And generally the jerky ones, are disliked by the other docs. But if you find that more often that not you are having issues with docs, its probably not them.

    It seems to be socially acceptable to healthcare bash. (Which is very different from sharing personal stories). But making broad negative statements about healthcare is something people just do, without taking into consideration that healthcare workers may be in ear shot. And most frustrating is people form opinions (that they think are facts) and they are just so out in left field on what they are saying...where do people come up with these ideas? People who are not even in healthcare think they have it all figured out, when really they have no clue how the inside of the healthcare beast works. Heck, those of us that work in healthcare are often just trying to help people but get caught in the bureaucratic current imposed on us by the hospital corperate leaders that don't give a rats butt about you. All they care about is $$$$, and we, the docs and nurse, are trying to advocate for the patient. But the guys that make the final decisions aren't health care providers, they are business men....
    But I never hear people bashing the CEO of our local hospital for cutting staff and supplies, while lining his own pocket. What people b!tch about is their nurse wasn't there is 3 seconds when they rang the bell for the 89th time...well if we had more staff and didn't have HOURS of paper work (paper work quadruples yearly...)maybe we could actually talk to our patients...But instead people that have no idea what's really going on, form opinions on why their nurse didn't bring them a glass of water for 10 minutes and how they nearly died from thirst...and they just think its the nurse being lazy....and GOD forbid we take a lunch...regardless, trust me, we do love our jobs, cause lord knows we would not do it otherwise.
    Ok seriously, I need to walk away from the computer, now.
    Last edited: Sep 2, 2012
  7. InsaneCdn

    InsaneCdn Well-Known Member

    PlainJane? Sorry. I'm with the others... and no, I won't write about it because I'd be here typing for years. NOT exaggerating. And yes... while I'm not married to an MD... I come from a family with lots of medical training on all levels (including a MD in family medicine). I'm not anti-doctors, but I do see major problems with the current North American medical practices (while Canada has a different approach to medical insurance, most of our medical training and practices are identical).

    Medicine has become extremely compartmentalized. We have specialists for everything imaginable, and generalists whose only function is to filter out who gets to see what specialist. If you happen to have something that doesn't fit the current list of who there is to send people to... you either get nothing, or you get labelled as a nut case.

    The link between physical health and mental health is extremely real. Failure to deal with physical problems leads to psychological problems. And once that happens? It becomes 100x more difficult to get ANYONE in the entire world to take you seriously... been there done that.

    The fallout from the last 10 years is that I need serious medical care, but have yet to find anyone that I trust. Most doctors figure I just need 2-4 weeks away from difficult child. As if THAT will solve anything... but I'm not rich enough to pull it off, nor am I prepared to live with the fallout (difficult child would not survive).
  8. Hound dog

    Hound dog Nana's are Beautiful


    I've also been on both sides, worked with docs, as well as been their patient. I come from a long line of medically trained people, many of them nurses. I'm a nurse, my daughter is a nurse, my sis is a nurse, my Mom is a nurse......I'd go on but it would be boring.

    My statement is based on my experience with docs in my area. If your area is producing better docs who are taught to actually talk to their patients then please encourage some to come to this area of the country, we sure don't get enough of them. Your experience also happens to be in your area, not the entire country. I did not say all docs don't listen to their patients and cop an attitude. Yes, I agree with you, there are some really good ones, some excellent ones. Finding them in this area is not always so easy, unfortunately. As as a nurse I've been told by numerous docs that they don't bother to pay much attention to what their patients say because they have no clue what they're talking about or they're drug seeking. Sadly, I've dealt with far too many nurses with the same attitude. Not all, thank heaven, but a disturbing amount. You hear it enough, and you assume that must be the philosophy they're being taught, perhaps that was a wrong assumption, granted.

    I don't health care bash. I believe the majority of healthcare workers, no I actually know the majority of them are out their busting their fannies to give the best care they can. They are not perfect and are as human as the rest of us. And no there is no way they can possibly instantly recall everything they ever learned in our out of school. But to not acknowledge that there is also bad health care is just wrong, because we know for a fact that is not the truth. It invalidates those that have lived through it and suffered due to it.

    So I'll just say that I disagree with you based on my own experience.

    This post was intended to give people the opportunity to express their own experiences of when doctors don't listen, and that is what the responses were about.
  9. PlainJane

    PlainJane Every dog has his day....

    I actually agree with most of what you've said. I get very frustrate at this huge crack so many patients fall into. If their diagnosis isn't clear cut, they shuffle around from doctor to doctor. I also agree that there are physical issues that should be (but are often not) ruled out prior to a mental health diagnoses. I believe in a holistic approach, meaning treating the whole person. (people sometimes use the word holistic in place of the word alternative or complimentary medicine, but it really means to treat the whole person) Including mind and spirit. I don't agree with (and this is my personal opinion) the fact that people go to the doctor for complaint X and they just get more pills added to their life...pills pills pills...pills will solve everything seems to be the philosophy. I believe that medications should be used in conjunction with healthy mind and body lifestyles.

    It really frustrates me when I see docs just going through the motions with patients and not really picking up on the clues (i.e. listening) to what the underlying issue is. But I think a lot more of it is that the docs are jaded (minus the ones that are just jerks)
    My husband sees it, I see it. The patient that has a poor diet, they are over wieght, don't exercise, don't practice any stress relief habits, they smoke or drink, they don't get enough sleep...they are living a life that would pull anyone into a depression...the mind and body are most definately connected. And they go into the doctor with their complaints of being tired and having pain...and I get FIRST HAND that if somthing is making you ill, you don't have the energy to go run 5 miles, but there are changes that patients can make, small steps that they can take to move towards health, WHILE their doctor should be checking on the physical end, to see if he can find a reason why they are feeling the way they are. But these patients continue to eat poorly, they continue to drink, smoke, stay up till 1am watching tv...and make no effort to change. And they come back in to the doctor 3 months later and still feel crumby, and they want the doctor to help them, mean while they've done nothing to help themselves. Not even read!! I mean I've done behavioral change models for school back in the day, and something as simple as a patient coming back to the doctor, but now with a lot of information is a great sign! If a patient says to me, I still haven't changed my eating habits but I've been reading about diet and nutrition and they show that they are more informed now than they were, well that is wonderful!...but people don't do that...well a majority don't...and after so many docs (and nurses) give up...well, some do, not all...they've just seen so many patients with the "make me feel great without me having to do a darned thing" attitude, they just start mindlessly throwing pills at everyone. Again I don't agree with that, but...

    It IS frustrating when docs don't listen. But there's going to be people throughout life that don't listen to something that they really should. And I have a personal experience with this, as a patient, because some doctors just plain suck. I get that.

    What I was making a point about is patients have a hard time getting that just because they are the patient, does not mean they have the right to act demanding and belligerent towards health care professionals.
    Hound Dog, your first post has some unfounded assumptions regarding medication school and quality of professionals, and I get annoyed because people just make this stuff up. And what you typed about nurses coaching residents is very well known, but you told it like is was some kind of sign that doctors are getting worse, but then you say you are a nurse, so this shouldn't be news to you...you also typed about stuff your friend who's a nurse told you in your first post, and now in your second post you are a nurse yourself...this is what I'm talking about!! Maybe you are a nurse?? But I kind of don't believe you, but if you are, fine. Your post does not sound like something I've ever heard an RN write, ever. It sounded a lot more like a frustrated patient that has dealt with too many jerk doctors and was venting, but some where in that vent your experiences flowed over into unsupported ideas about healthcare, and that's what I was pointing out. I didn't mean to personally attack you, I apologize that it came off that way. Last night my husband was supposed to be home at 9 and got home and 11:30...time away from his family. He went into medicine to help people. My husband was very sick as a child with uncontrolled asthma and has had attacks so bad that he has been on a vent. I've known my husband since high school and he has always wanted to do what he does. But day after day, the drug seekers (and yes a lot of them are drug seekers) the people that go to the ER for a runny nose, the people that are rude, demanding,...the people that google their sypmtoms then LIE to him, and say they have no idea what's going on...then at the end of their visit tell him they were testing him to see if he would guesss what they thought...yeah, that's actually more common then you think. I'm surprised by that one, testing your doctor, that's just sneeky and stupid...people that go to their primary, don't like what he said then go right to the ER for a second opinion...its an ER not a place to get a second opinion when your primary didn't tell you what you wanted to hear!! And then when people actually do come in with an emergency, the people that have been in the waiting room for hours for their sore throat complain, yes, they loudly complain that someone with chest pain went back before them...

    That kind of immature, rude, entitled behavoir wears on health care workers. People are at their worst when they are ill, we get that, but there's a lot of mental abuse in this profession, so my point about attitude was, if you start off with an attitude with your healthcare providers, you likely won't get too far. That rule applies to every area of life really.

    On the other hand, I do believe that a patient's best chance at finding a good doctor is education!! Read read read! And not on random internet sites, make sure they are credible sites that support their claims. Never stop researching. And I do believe in listening to your gut feeling. If you go to a doctor and your gut is telling you they are blowing off something you want to check out, you can ask them, but if they still refuse, move on! There is no point is telling them off or getting an attitude, that just shows lack of class. Just finish your appointment, and don't ever go back. I've done it myself. I have a doctor completely ignore something I knew was not right. I didn't care for her or her dismissive attitude, so I moved on, and was diagnosed a few months later with an autoimmune disease. There was no reason for me to get fresh with her. When I come across people in life that I think are usless in their profession, a poor mechanic, a bad landscaper, a crumby waitress...causing a scene does no good. That was the other point I was making. Some people and I'm not saying anyone here, I was just blabbering, anyway some people are proud of themselves for telling off docs. But those are the same people that are rude to sales people, waitresses ect...so no surprise there.

    Hound dog, the other posts were about docs not listening. I read this thread with the intention of adding my own story (the autoimmune thing I mentioned) but your post did vear off and made some general assumptions about medication schools, comments about the quality versus quanity, which doesn't make sense...are you saying they push docs and nurses through school faster? so that they are not trained as well? Because that's not true at all. Are you saying that on the job training is quicker? That's not true either. I just don't understnad how that even applies to us. But people will read it and believe it because if its written on a message board it must be true...(and yes this logic can be applied to my posts, just because I type it doesn't make it true). I have heard that medicine in other areas of the country are not functioning to the standards we do. I don't know because I've only lived and worked here. I live with in driving distance of some of the best hospitals in the country and my husband went to school at one of the best schools in the country...so my views are likely bias.
    I know what this thread was about. Your first post did cross over to this topic. And I just took it an ran, really really far apparently...
  10. TerryJ2

    TerryJ2 Well-Known Member

    I see so many familiar, shocking, and sad stories here ... :(
    I don't have time to type my own, but everyone MUST BE a SELF ADVOCATE when it comes to doctors.
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Doctors often hand out the medication that they get kickbacks from and they actually listen to the drug salesmen.

    in my opinion and experience working and seeing doctors, they are no different than any workers. Some are good, some are average and some are TERRIBLE. You need to find out before you go. There are doctors who have very articulate patients (like me) who still can't diagnosis well. There are doctors who will never admit they don't know or that they are wrong. They are doctors who are pill pushers. There are doctors who are remarkable and you have to look for those doctors.
  12. Hound dog

    Hound dog Nana's are Beautiful

    I explained how those "assumptions" came about, so I do not consider them unfounded, although I admit I shouldn't have generalized so broadly. As I am biased due to my own area which happens to be rural midwest, and also happens to span 3 states within that area. I do happen to be a nurse, and I could care less whether you choose to believe that or not. Based on my experience, quality has gone down, at least in this area. And it's not just my opinion but one shared by experienced personnel in the area. And that "friend" happens to be my daughter, so perhaps you didn't read my original response quite as closely as you think you did.

    Rural areas do not tend to get the cream of the crop when it comes to docs. When they do it's either because it's their hometown or the area draws the doctor for some other reason. If it's the latter they don't hang around long because the medical facilities at their disposal are nothing like a major city hospital, the pay is not so hot, and they tend to get frustrated and leave. This means patients wanting quality care, especially in specialized areas, travel an hour or more to get to those docs one way. Many simply cannot do that for a wide variety of reasons.

    Based on your personal experience in teaching hospitals (which have the best resources in the country) which also happen to be some of the best hospitals in the country you assume, incorrectly, that that same level of care is available to every person everywhere. I understand where you're coming from, and I'm glad you have those services available to you and others in your area. But to assume everyone else does as well is just plain wrong.

    And yes, my post was indeed a vent. I didn't claim it to be anything else. It was/is based on my own personal experience. Due to that experience, it happens to be a touchy subject with me for very valid reasons.

  13. ThreeShadows

    ThreeShadows Quid me anxia?

    MWM, I can't let that kickback comment go unchallenged. I have been married to an MD for decades. Monetary kickbacks from pharmaceutical companies to get docs to prescribe their products are virtually non existent. A tiny minority of ethically challenged physicians have accepted junkets involving golfing or travel paid for by Big Pharma.

    Nowadays, the most widespread attempt to influence prescribing practice involves a lecture, followed by a meal at the company's expense. A well respected clinician who has studied the relative merits of the class of drugs under discussion is chosen by the company to present the data showing their medicine's comparative advantages. They hope to sway the physicians' prescribing habits by using a believable scientific approach. It is up to the docs present at the lecture to be skeptical and ask tough questions.

    Drug detail men/women are treated as a joke by physicians and their office staff. My internist won't even allow them into his office. The sales people almost never see the physician and the staff will only take samples of drugs to give to their needier patients. The salesmen hand out small things such as pens imprinted with the company's name. I would hardly call those a bribe.
  14. susiestar

    susiestar Roll With It

    I used to live in the area near where Hounddog lives and she is NOT wrong about that area. The stories I could tell would scare you away from hospitals forever. Heck, one of my great uncles went in for eye surgery for cataracts and they removed his GOOD eye and left the other one alone in spite of writing all over his face with a sharpie to mark what they were going to do. They mixed him up with another patient and let a doctor who was higher than a kite and reeking of whiskey do the operation. the other patient was to have his eye removed because it had an infection that was at imminent risk of going into his brain. That guy DIED before they could get him over the cataract surgery he didn't need and strong enough to have the correct surgery done to remove his infected eye. He spent 2 weeks in Hades from the infection that ate his brain. My great uncle felt lucky that he got away just having his eye removed!

    Same town they flat out refused to do anything to deal wtih my child's fear of hospitals and docs when he had to have tests done. My child was afraid because he had previously WOKEN UP during surgery (and we found out as he told us all about it - he was TWO - after he came home from the hospital!) and his blood pressure went so high during some tests that he almost had a STROKE but the docs didn't really seem to give a hoot.

    I was lucky to find a doctor there who LISTENED and CARED, but it took seeing at least 10 docs to find him. I actually got to this good doctor via referral from the OB who delivered me! It was the doctor he sent his grandchildren to, and with-o his referral I might never have been accepted as a patient.

    there are good and bad docs, but honestly, I don't think listening skills are stressed much anymore and it is very hard to get a doctor to pay attention to a patient, and even harder if that patient is female. Sorry, that may offend some and isn't meant to. I just know that my dad, bro, husband, male children ALL have easier roads to good medical care and prompt medical attention and appropriate services than my mom, mother in law, stepmil, daughter, and myriad other female relatives have had. EVERY SINGLE ONE of my daughter's childhood friends has been diagnosis'd with 'conversion' or some sort of 'it's all in your head and not real' diagnosis before the group of them hit 16. We are NOT living in the are that HD is in anymore, and I am talking about more than a dozen girls that J has been friends wth since age 6. I could see one or two fo them, but broken bones and bronchitis and pneumonia and strep are NOT conversion disorders unless you are female in this town. Cause those are generally the problems that get a 'conversion' diagnosis around here.

    Yes, when J was first given this diagnosis there were MANY here who urged me to go ahead with treatment for it, because it COULD be that - the brain CAN do strange things. But when we spent YEARS going to appts to get treatmetn for that from tdocs and psychiatrists and over and over they told us that they had NO clue how anyone could find this to be conversion, well, what am I supposed to think? Cause she has done all types of psychological therapy and her medical problems don't get any better. So my gut says it isn't a psychiatric problem but a bad neurologist problem and I hope to figure out some way for her to be able to go to college and figure out some kind of life.

    In my experience the best way to figure out what is wrong is to do some research and read and listen and follow your instincts. If the doctor insists it is something you strongly feeli t isn't, or if the treatment is causing huge problems, then it is time to read and ask questions and figure it out yourself. My vit D deficiency was noted on lab tests for almost 15 YEARS before ANYONE bothered to say a single word of it to me. We actually found copies of tests my mother kept from my teens that showed it back then. Vit D levels of 1 or even 0 and NO ONE bothered to say a word. Now? My teeth are disgusting crumbling ugly things and nothing will help them. My ortho surgeon who did the last disc fusion was AFRAID and almost closed me up with-o even trying because the bones were that thin. Bone building medications like fosamax are not possible because I don't have enough D in my body for the medications to put calcium back into my bones. My calcium levels are fine, but it is because it is coming out of my bones into the blood. I figure in another decade or two I will be a jellyfish. I wish it was a joke. I still have docs who insist that I should take super high vit D. At least they do until they realize that it makes me spend days nonstop vomiting and nothing stops it. Plus it never raises my D levels.

    had ANY doctor just LISTENED to the way my pain acts, or bothered to LOOK at the lab reports - which have bright red all caps bolded lettering showing that the results are dangerously low - then back when I was a teen/twentysomething they could have figured a way to deal wtih this. Instead several decades went by and now? No one can figure out how to teach my body to use Vit D for anything other than an emetic. A very effective, lasting emetic, but an emetic nonetheless. The last doctor who tried to force me to take the rx vit D supplement was told I would be happy to as long as he would stay right there by me for me to puke on the entire time it kept me puking - which was several DAYS. He allowed as how he had other things to do so we would try to think of something else. If I hadn't threatened to puke on him in his office he would have just written the rx and walked away from me.

    I will say that along the way I HAVE found docs who are exceptional. I had an awesome doctor in HD's area who called me on a Sunday evening a few weeks after I had J to tell me that while my cholesterol levels were high, it was just because the pregnancy and they would go back to normal. He had just looked at them, realized that a copy had been mailed to me, and didn't want me to worry. He also did a LOT of research into arthritis variations and fibromyalgia and the nerve issues I have.

    I had an incredible rheumy here in my current state. Amazing man, has a painful disorder of his own so he KNOWS what it is like. a friend of mine stood in a parking lot one night an we argued about how my doctor was better than her doctor - then we discovered we BOTH had the same doctor!!!! He was the one to find the vit D problem, to find the old records, and he went to not one but THREE conferences in large part because there were experts on Vit D that he could talk to about my case because it is so odd. He didn't stint on pain medications, but he also made sure that I was aware of the risks and problems. He also sent me to my amazing pain doctor who is the sweetest, kindest doctor I have ever met.
  15. ThreeShadows

    ThreeShadows Quid me anxia?

    Lisa, our 50 bed hospital in very rural Maine had an extraordinary staff. husband graduated from Johns Hopkins, where he had been Chief Resident in Diagnostic Radiology, an orthopedist had been the first woman Chief Resident at the Massachusetts General Hospital, two of the internists had been Chief Residents at Strong Memorial in Rochester, NY. A pathologist had been Chief Resident at Case Western Reserve in your state. These docs moved to that community in order to service those patients who needed them the most. Staff turnover was low. husband stayed there 24 years. He brought, to that 50 bed hospital, in-house ultra sound, CT, MRI, cardiac nuclear medicine, stereotactic mammographic biopsy, and US and CT guided solid organ biopsy All these physicians could have made twice as much money in suburban America. But they chose a different life for themselves and their families. I'm very sorry that you have not been blessed with such an institution. That makes me sad.
  16. DDD

    DDD Well-Known Member

    I'm jumping in here because I, too, come from a family with a sizable number of MD's and amongst our offspring there are alot of bright and caring MD's. This in my humble opinion is not a personal attack on medical care professionals. in my humble opinion, it is just scarey how often under educated or over worked medical care professionals miss the opportunity to help patients. I truly don't believe that there is any intention of providing "wrong" info but Marcus Welby only had a patient an hour and he was able to listen and explore and follow thru. In today's world even the most caring MD's are booked. Some are booked to the max.

    Having raised three difficult child's between 1964 and 2012 with mh issures I "get it". I have lucked out locating a couple of really bright, energetic and informed listening physicians....MD's who have allowed my daughter, GFGmom and her two sons to survive. The help I have been able to locate I would not have been able to locate if I were on poverty level although as you guys know husband and I are just getting by in our old age. Yikes.

    What I want to toss in to this thread (Lordy, I hope it doesn't depress or irritate you guys when I bring up cancer) is that I now have joined two health threads with cancer info. OMG I can't even tell you how shocked I have been that patients are often inadequately informed. This week I was moved to tears (not something that happens often, sigh) by a female post saying "yesterday was the fourth week since my color cancer surgery and the Dr. did not tell me what stage cancer I have but made an appointment for me to start chemo Tuesday at a nursing home a six hour train ride from my home".

    The point of my post is this. IF you are truly needy...emotionally or medically or psychologically...there is a darn good chance that some sob will "tell" you what to do and you will say "ok" because you don't have the education or the training or whatever to say "wth?". It makes me sad realizing how many patients are vulnerable. DDD
  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    DDD, I"m so sorry and I totally understand.

    As for the drugs, I have no idea why certain drugs become the "drug of the day" or w hy some diagnoses are suddenly "the diagnosis of the day." I don't know why so many people are misdiagnosed in all areas. My friend had breast cancer. It showed up on her mammo but the doctor missed it. Two years later, she felt a lump and went to a different doctor and he looked at her old x-rays and was shocked that the doctor missed the obvious cancer in her breast two years prior. Although I'm not a doctor I worked in hospitals for four years and had many nurse friends who swore that Dr. XXXX was a moron who they would never go to and Dr. XXX was really a good doctor and that all the doctors sent their family members to Dr. XXX. They told me the way to find a good doctor is to find out where the doctors send t heir wives and children w hen they are sick. Of course, that's not easy to find out unless you work in a hospital setting.

    I have lived near the Chicago area and in more rural area. In the Chicago area, sadly there were as many horrible doctors as good ones (no different than out here in a rural area that, at least, has an excellent, large medical clinic.) The University of Chicago, however, was the absolute best hospital I know of. They saved my brother's life and diagnosed him with Crohns, which had turned into blood poisining, because of other doctors wrongly diagnosing him, all the way from saying he just had anxiety to saying he had Meditarranean's Disease. Ever hear of Meditarranean's disease? Neither does the DSM know of it. It doesn't exist. He had been from doctor to doctor from age 12 until 19 when he almost died. The first good psychiatric help I ever got was also from that same university hospital. It was outstanding. I would say university hospitals attract the best and brightest and are always on the cutting edge of treatment.

    I didn't start this thread to talk about where to find good doctors, but I'm glad it came up. in my opinion it is well worth it, even if you don't live near a university hospital, to go to your nearest one if you are ill and going nowhere. Your average doctor in the comfy suburbs of Chicago may be a genius at diagnosing, may b negligent about running important tests, may hoover at diagnosing or may be downright incompetent. And in the mental health field it is even worse since there are no blood tests to diagnose for sure.

    There are doctors I've loved, but there are more that had me shaking my head. I especially put psychiatrists into that category. But it isn't limited to them. I actually like nurses, especially NP's, better than doctors. They seem to have a better attitude and also seem more willing to hear the patient speak, at least in my limited experience. My primary is a NP by choice. She is a great diagnostician, sends me to the best doctors when I need something she can't provide, and she doesn't rush me out of the office while writing quickly on a prescription pad. She is very patient. Maybe NPs are the future rather than GPs.
  18. AnnieO

    AnnieO Shooting from the Hip

    I mentioned that my personal doctor was awesome. Now, he didn't take medicaid when the kids were on it, or they'd be going to him, too.

    It's a 35-minute drive in light traffic from home. Normally, though, it's more like an hour. We lucked out with the kids, though - they have a practice with NPs and GPs.

    The VA hospital where my 92-y/o grandpa goes, in CO, is AWESOME. The one here? Not. They were recently investigated for a dentist who did not wash hands between patients. Seriously. He was allowed to retire, full pension, before the investigation was complete. I waited for husband in a waiting room 16 months ago, for 4 hours because they didn't know I was there - and another hour after I finally just walked BACK INTO THE ER, UNCHALLENGED, they were shocked that husband was still there. NO ONE KNEW. The man was having problems BREATHING the day after rotator cuff surgery. FWIW, the nurse who figured it out went OFF. We got out of there pretty quick after that. But still.
  19. susiestar

    susiestar Roll With It

    MWM, I DO know why some drugs become so popular. Drug co reps are why. I went to college with a number of people who became pharmaceutical co reps and if you ever want a cushy cushy job, that is one. These people arrange golf outings, lunches, dinners, parties, and go around to talk to docs about how great their medications are. They have not got a lot of medical training, mostly just know whatever is in the big print on the company info about the drug, but they go and push that drug to the docs, psychiatrists, nurses, staff, etc..... They also give out TONS of stuff with their logos on it. They do have to be fairly strong to carry all that stuff around because it can get heavy.

    MANY docs only know what the drug rep tells them about the medications. The docs don't have time to read all the info on every drug. My fave docs are often those who will pull out a pda or sit at the computer and look up a medication and check interactions BEFORE they write the rx's. I tend to prefer the older drugs because honestly, we really have very little info on what the side effects of the newer drugs are. Esp because the pharm co's are legally able to suppress any and all studies that show problems with their drugs. (When I say 'MANY docs' I mean many that I have encountered and many that the drug co reps I used to know would talk about. The drug co reps knew that the docs were NOT going to take the time to read the prescribing info for the medications - where would they get the time with all the patients they have to see? I am NOT slamming doctors for not reading, just stating that most docs are seriously overbooked and there is a lot of info in tiny print about every single medication and it would be unrealistic for us to think that docs take the tme to read the full rx'ing info for every drug. How many patients read the full info about a medication that they get from the pharmacy? How many patients read ANY of the info that they get about their medications? I just don't want anyone to think this is a slam against docs - it is a statement of how it is for the docs I have spoken to about this issue.)

    MWM, do you remember back when they were rx'ing neurontin as a mood stabilizer? Then a lawsuit revealed that it did NOTHING to stabilize moods and the company knew it and they were pushing it as a mood stab anyway? I really wish that were the exception, but it is all too easy for this to happen. Docs heard the reps telling them how great the medication was and they had to blieve something. But when patients didn't get better, the docs didn't stop to think it was that medication, they thought it was something else because they were told many times how great the medication was. Neurontin (gabapentin) is great at some things. it is a very useful medication for certain disorders. but it is NOT great as a mood stabilizer.

    It took YEARS after the lawsuit made it very public that neurontin was NOT a mood stab for docs to stop rx'ing it for that purpose. One of the docs we saw for Wiz was very upset that even a year or two after the info went public he was still getting new patients who were on that medication.

    Not all pharm reps are awful or bad. They do serve a purpose, but that purpose often puts medical info into the minds of docs when the rep is a salesman and NOt a medical professional. But that is why some drugs become very popular - the drug co throws a ton of $$$ into marketing and the drug reps arrange meals and outings so they can tell the docs all about their products.
    Last edited: Sep 4, 2012
  20. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Susie, that is EXACATLy what I said and was shot down, but I have heard enough that it is right. Big pharma has a lot to do with what we are given and what our kids are given. Along with that, something I understand less, is this "diagnosis of the week" phenomena. At first it was ADHD. Everything was attributed to ADHD from mild inattention to laziness to wild raging and violence. Then came bipolar. I am personally not convinced anyone can diagnose actual bipolar in children since there is no mania and depressive cycles in most kids and I personally (doesn't mean I'm right) don't buy that the kids just cycle faster. I can see more a diagnosis of emotional dysregulation in moody kids, but bipolar brings out the BIG GUN medications that hurt my son AND me so badly. And it assumes that, as an adult, the child will suffer from out and out bipolar. There are no studies indicating that they are right, but bipolar is definitely one of the newest diagnosis. of the week. Along with that is Aspergers, which has been written out of the DSM. I like the idea of the DSM lumping everything into autistic spectrum disorder, with differing degrees of it being diagnosed, but not making Aspergers seperate.Why?

    Well, many kids diagnosed with Aspergers are FAR less functioning than my son Sonic and I feel it is merely a "feel good" diagnosis. It hurts more to hear Pervasive Developmental Disorder (PDD)-not otherwise specified or autistic spectrum disorder. My son was actually diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified and most of the kids diagnosed with Aspergers that I have met in our large autism parent group have k ids who are far more clueless and less capable than my son. I don't know how most will function on their own, but because of the "Aspergers" label, the parents hold onto the belief that their 21 year olds who can not take care of themselves will be able to be self-sufficient and live like a typical person. Some can. Some with lower functioning autism can (see Donna Williams). Is this the rule? No. Most would in my opinion do better in a setting where they can be looked after at least a little b it, at least in the US (I do not know how this is handled anywhere else). So in my opinion (and I don't mean to offend anyone and am not saying I am right...this is my opinion) this is another big diagnosis of the day. Often Aspegers kids do not get the good services other Autism Spectrum Disorders (ASD) kids are offered and really flounder. I have seen it. Even worse, most are still living at home with Dad and Mom at 29. We have adult kids in our group with aging parents who still take care of their Aspie kids rather than wondering what will happen once they are no longer able to provide for them. I don't know how these "diagnoses of the week" come about. Maybe doctors go to conferences and some doctor has a theory and many jump on the bandwagon. I have come to mistrust, more than anything else, psychiatric diagnosis. Hells bells, at t hree years old I told my sons' psychiatrist I thought he had autism. The little boy would rock and echo and copy what he heard on TV and point rather than speak and potty in his pants...yet "he is too friendly to be autistic so he is ADHD/ODD." Nonsense. In the end we were right.

    I'll bet Mom Gut is way more accurate than Therapist or even psychiatrist gut. We know our k ids. They see them for limited amounts of time. It is a gift indeed if you find a professional who believes you, the parent, have worthy knowledge. I find neuropsychs to be the most receptive to what we tell them. Poor Sonic had a psyschiatrist who refused to let go of his bipolar diagnosis. If you met sonic, you would never think he has BiPolar (BP) or any mood disorder and you are laypeople. Why did the psychiatrist keep insisting he was right?

    Ok, probably off topic and serious...I do not mean to offend anyone here. I am simply stating my own opinion. Opinions can be wrong. It is our perception and experience that shapes our opinions.