tintx
11-30-2004, 07:29 PM
I need to get this off my chest!
I was thinking last night about all the visits i made to various doctors starting back in the early 90's, now I know the problem was this neck thing, even back then. I was having problems with muscle spasms, pain, difficulty walking/leg stiffness, pain in my forearms that was diagnosed as tendonitis, headaches, fatigue. It makes me furious, thinking of all those years I was not treated medically but treated like a hypochondriac with the insinuation that stress or depression was causing my physical problems. It was dealing with the physical problems without any help that contributed to stress and depression. People treat you like you're malingering, it's very demoralizing and lonely. But I always kept going, working and everything, without having any treatment or explanation of physical problems that were having negative effects on my life in the short and long term. I was lucky, too, that my problems weren't incapacitating. It's been really hard, and I hate for anyone to have to go through that kind of experience.
It was a battle up to the bitter end to get diagnosed, which finally happened only two months ago. And then, it was me who insisted on having a myelogram, it was me who said, yeah, go ahead and do the neck too on the ct scan. It was me who said, yeah, let's see yet another neurosurgeon, even after I've been "dismissed" by several. I'm fairly assertive, yet it's taken over 13 years and I've probably been seen by 20 doctors. I'm really disappointed in doctors in general, and feel that many of them are grossly discriminatory. I just hate them sometimes, how dare they blow me off that way, making assumptions because I'm female or a certain age, or whatever.
It's an abuse of power, it's dishonest and it's added to my suffering.
My opinion is that most doctors aren't very good when it comes to diagnosing something beyond the ususal. I think it's criminal that so many label the problem as stress or depression to cover up their own ignorance or incompetence. Not only do they not help the patient, but do them a disservice by telling them "nothing's wrong with you," therefore you must be crazy. No doctor's told me that in so many words, but the inference is obvious. And, to add insult to injury, I or my insurance co has been paying these people, paying them well! I'm not crazy, but there's something very irrational about a system that functions/malfunctions this way.
I know there are good doctors. I believe the one I have now is a good doctor, and I'm grateful. But that doesn't excuse those others that are out there, doing damage because they won't admit their own shortcomings, discriminating against certain types of patients due to their own biases, all because they can get away with it, because they're in a position of power, all while they're taking your money. I don't expect them to be perfect, and I know I have a choice and that i live in probably the best country in the world to get medical care. It's the discrimination that chaps my ***. Recent studies have shown that women with heart disease still don't get diagnosis and treatment as soon as men, and they're dying because of it. I guess I've just experienced the effects of discrimination too often in my life, on the job and now when I try to get medical help. It's frustrating, maddening, depressing, and makes you feel hopeless and powerless, feelings I'm not comfortable with!
Thanks for letting me vent, and if I can find a way to combat this, I'll do it. I'm sure my story is small potatoes compared to some. I've been looking for something to write a book about... :)
Tintx
I was thinking last night about all the visits i made to various doctors starting back in the early 90's, now I know the problem was this neck thing, even back then. I was having problems with muscle spasms, pain, difficulty walking/leg stiffness, pain in my forearms that was diagnosed as tendonitis, headaches, fatigue. It makes me furious, thinking of all those years I was not treated medically but treated like a hypochondriac with the insinuation that stress or depression was causing my physical problems. It was dealing with the physical problems without any help that contributed to stress and depression. People treat you like you're malingering, it's very demoralizing and lonely. But I always kept going, working and everything, without having any treatment or explanation of physical problems that were having negative effects on my life in the short and long term. I was lucky, too, that my problems weren't incapacitating. It's been really hard, and I hate for anyone to have to go through that kind of experience.
It was a battle up to the bitter end to get diagnosed, which finally happened only two months ago. And then, it was me who insisted on having a myelogram, it was me who said, yeah, go ahead and do the neck too on the ct scan. It was me who said, yeah, let's see yet another neurosurgeon, even after I've been "dismissed" by several. I'm fairly assertive, yet it's taken over 13 years and I've probably been seen by 20 doctors. I'm really disappointed in doctors in general, and feel that many of them are grossly discriminatory. I just hate them sometimes, how dare they blow me off that way, making assumptions because I'm female or a certain age, or whatever.
It's an abuse of power, it's dishonest and it's added to my suffering.
My opinion is that most doctors aren't very good when it comes to diagnosing something beyond the ususal. I think it's criminal that so many label the problem as stress or depression to cover up their own ignorance or incompetence. Not only do they not help the patient, but do them a disservice by telling them "nothing's wrong with you," therefore you must be crazy. No doctor's told me that in so many words, but the inference is obvious. And, to add insult to injury, I or my insurance co has been paying these people, paying them well! I'm not crazy, but there's something very irrational about a system that functions/malfunctions this way.
I know there are good doctors. I believe the one I have now is a good doctor, and I'm grateful. But that doesn't excuse those others that are out there, doing damage because they won't admit their own shortcomings, discriminating against certain types of patients due to their own biases, all because they can get away with it, because they're in a position of power, all while they're taking your money. I don't expect them to be perfect, and I know I have a choice and that i live in probably the best country in the world to get medical care. It's the discrimination that chaps my ***. Recent studies have shown that women with heart disease still don't get diagnosis and treatment as soon as men, and they're dying because of it. I guess I've just experienced the effects of discrimination too often in my life, on the job and now when I try to get medical help. It's frustrating, maddening, depressing, and makes you feel hopeless and powerless, feelings I'm not comfortable with!
Thanks for letting me vent, and if I can find a way to combat this, I'll do it. I'm sure my story is small potatoes compared to some. I've been looking for something to write a book about... :)
Tintx
Sponsor
DonnaKay
12-01-2004, 12:08 AM
Before my first surgery, I suffered with my left arm for years! I was told I had carpal tunnel (I do, but it is mild to moderate on my left side), had a ganglion cyst removed, and when all of that didn't help, went back yet again and was told I have a torn rotator cuff. Then my neck snapped, and lo and behold, my arm quit hurting after surgery!
I know how you are feeling about all those years of mis-diagnoses. I'm not mad at the doctors that tried to help, but do always make sure people with my former symptoms know not to simply dismiss their neck! Of course, they don't want to hear that! lol I wouldn't have thought it possible about myself, either. But now, I'm walking, talking proof. Prior to that surgery, I didn't even know how the people were feeling that said "oh, I must have slept wrong last night", or "I have a crick in my neck". I had never had any of that until it "snapped" (for lack of a better word).
Glad you are feeling better!
D
I know how you are feeling about all those years of mis-diagnoses. I'm not mad at the doctors that tried to help, but do always make sure people with my former symptoms know not to simply dismiss their neck! Of course, they don't want to hear that! lol I wouldn't have thought it possible about myself, either. But now, I'm walking, talking proof. Prior to that surgery, I didn't even know how the people were feeling that said "oh, I must have slept wrong last night", or "I have a crick in my neck". I had never had any of that until it "snapped" (for lack of a better word).
Glad you are feeling better!
D
solardust
12-01-2004, 07:42 AM
I am on board with you,and oh the heart disease I am living proof ,(thankGod)that women get passed over as worry warts ect...,even after my massive heart attack,I had a ER Doctor treat me as a panic,it took my husband screaming and a call to my heart doc to get me treatment, turned out my left decending artery dissected 9 inchs,yep 9 inches,UW Hosp,said I should not of survived it,and yes with this neck and lower back I went through yrs of symptoms only to be given some pills and shipped on my way,my sis 4 yrs older, went into hosp with heart symptoms,when I got there they were giving her another,nitro,I asked how many have they given you, 7!!!!! just so happens the doc came in, and I asked ,dont you think she should be put on cardiac unit?"Oh no he says she is much to young to be having heart symptoms."Well I pulled down my t-shirt and showed him my zipper!yeah and I am 4 yrs younger,boy he sprung into action then, turned out she had 12 yes 12 blockages,all I do know is educate my kids, and tell them to hold thier ground , scream if need be,but.....never walk out feeling the fool!Thankyou Tinx for bringing up the subject,I needed to vent to. Diana :D
tintx
12-01-2004, 06:55 PM
DK & Diana,
Thanks for your replies. The only doctors I'm mad about are the ones who Did Not try to help, but wrote me off as not having any problems! And Diana, sorry they almost let you and your sister die for not taking you seriously. This is a real problem in the medical profession, not the fact that doctors make mistakes and misdiagnose, they're only human. It's the faulty assumptions some of them make, categorizing patients according to bias and stereotyping, while ignoring facts and evidence, and just plain not listening. It's insulting at the least, but in the worst case dangerous for their patients. Those are avoidable mistakes, and the profession must take a hard look and correct this type of malpractice. Oops, there I go again!
Tintx
Thanks for your replies. The only doctors I'm mad about are the ones who Did Not try to help, but wrote me off as not having any problems! And Diana, sorry they almost let you and your sister die for not taking you seriously. This is a real problem in the medical profession, not the fact that doctors make mistakes and misdiagnose, they're only human. It's the faulty assumptions some of them make, categorizing patients according to bias and stereotyping, while ignoring facts and evidence, and just plain not listening. It's insulting at the least, but in the worst case dangerous for their patients. Those are avoidable mistakes, and the profession must take a hard look and correct this type of malpractice. Oops, there I go again!
Tintx
solardust
12-02-2004, 12:29 AM
Ya got me laughing there!Thanx,but how right you are.I am now hooked up with 2 very fine Doctors,and grateful for that,but you are right,male and female patients are at the mercy of what may be just paper pushing , pill pushing Doctors,who may or may not of had a good day,I realize they are only human,and can except mistakes,but pure ignorance is not excusable,guess this is a hard subject not to carry on about,but well worth the heads up.Diana
dennisgb
12-02-2004, 06:54 PM
Here is a long story about doctors that I have wanted to tell, and it fits here really well.
I believe you have to listen to your body. It tells you when something is wrong. I don’t think there really are hypocondriacs, just people with symptoms that the doctors can’t figure out. I had a terrible period of immune system problems, that manifested itself as extreme angiodema. I had huge hives on my head and face and sometimes on my torso. They also would get into my lungs and heart, and I almost died twice. I went to the emergency room 10 – 12 times over a short period. Doctors said “We know what it is, but we don’t know how to treat it.” They didn’t know the cause. Now, at first I was told that it was in my head and given some antidepressant and sent home. Eventually it got so bad, that I was very sick. They pumped me full of a lot of drugs and tons of steroids.
Anyway, I was at the chiropractor one day, and he was working on my back and noticed a lump in one of my ribs. This was a rib that had been broken during gall bladder surgery about 5 years before. He looks at an X-ray in my file from a year or so before, and says we need to get another X-ray. After the X-ray, he calls me and says “Get to your doctor immediately”.
I go to my doctor, and he says, we need to run some tests, but you need to prepare yourself for the worst. He then tells me about five things that this might be, all of them fatal. So over the next month or so, I have all kinds of bone scans and tests, concluded with a biopsy. I am a total wreck, stressed to the max, and figuring I’m gonna die. When the results came back, they still didn’t know what was going on, but it wasn’t cancer, and I wasn’t going to die.
The decision was to take the rib out. I had surgery to remove the rib. It was tested for every possible thing in the lab. Eventually, they determined that it was infected with staph…from my gall bladder surgery. I was on antibiotics for a while, and what do you know, my immune system goes back to normal!
I believe you have to listen to your body. It tells you when something is wrong. I don’t think there really are hypocondriacs, just people with symptoms that the doctors can’t figure out. I had a terrible period of immune system problems, that manifested itself as extreme angiodema. I had huge hives on my head and face and sometimes on my torso. They also would get into my lungs and heart, and I almost died twice. I went to the emergency room 10 – 12 times over a short period. Doctors said “We know what it is, but we don’t know how to treat it.” They didn’t know the cause. Now, at first I was told that it was in my head and given some antidepressant and sent home. Eventually it got so bad, that I was very sick. They pumped me full of a lot of drugs and tons of steroids.
Anyway, I was at the chiropractor one day, and he was working on my back and noticed a lump in one of my ribs. This was a rib that had been broken during gall bladder surgery about 5 years before. He looks at an X-ray in my file from a year or so before, and says we need to get another X-ray. After the X-ray, he calls me and says “Get to your doctor immediately”.
I go to my doctor, and he says, we need to run some tests, but you need to prepare yourself for the worst. He then tells me about five things that this might be, all of them fatal. So over the next month or so, I have all kinds of bone scans and tests, concluded with a biopsy. I am a total wreck, stressed to the max, and figuring I’m gonna die. When the results came back, they still didn’t know what was going on, but it wasn’t cancer, and I wasn’t going to die.
The decision was to take the rib out. I had surgery to remove the rib. It was tested for every possible thing in the lab. Eventually, they determined that it was infected with staph…from my gall bladder surgery. I was on antibiotics for a while, and what do you know, my immune system goes back to normal!
solardust
12-03-2004, 01:42 AM
Dennis, I can only imagine the rollercoaster of emotional hell that was for you,crazy,it seems that the nightmare of misdiagnosis has no bounds,just too crazy.Diana
zoey1
12-06-2004, 09:03 AM
The sad thing is that this is the norm and not "out of the ordinary" i had 10 years of severe pain miss treated, hypothryiodism not in range and acatul LAB tests that were never fully read right
they form an opnion and don't even totaly look at results!
i tested postive ana antibodies, highest sed rate ( over the out of range ) all kinds of stuff that was all reported to me as normal, and the thyriod was "out of range", so not on was dealing with miss diagnoses from multiple docs
but out and out not reading lab reports right in front of there noses
it was my rhumotoligst which took years to get a referal that got me on track again with finding out what's wrong with me. did right referals and now on course for pain managment and treatment of multiple problems
and i hated the fact i had a sigh of relief knowing it was real, not all in my head, and the worst part is paying for all those lab reports where it was right there all along.........................
they form an opnion and don't even totaly look at results!
i tested postive ana antibodies, highest sed rate ( over the out of range ) all kinds of stuff that was all reported to me as normal, and the thyriod was "out of range", so not on was dealing with miss diagnoses from multiple docs
but out and out not reading lab reports right in front of there noses
it was my rhumotoligst which took years to get a referal that got me on track again with finding out what's wrong with me. did right referals and now on course for pain managment and treatment of multiple problems
and i hated the fact i had a sigh of relief knowing it was real, not all in my head, and the worst part is paying for all those lab reports where it was right there all along.........................
tintx
12-06-2004, 10:43 PM
Zoey and Dennis,
I'm sorry you both had such a hard, long time obtaining diagnosis and treatment. But I'm glad you posted your experiences, and hope it's helped to share your feelings.
Zoey, your comments confirm for me again just how powerful doctors can be, that they can cause us to doubt ourselves. There's just something wrong with the conversation between doctors and patients when this kind of thing happens.
So, Dennis, your angioedema was due to the staph infection acquired at the site of an accidental break to one of your ribs during the course of gall bladder surgery years before? That's quite a story, and really interesting that your chiro was the one to actually stumble onto the cause of all those problems. What an awful, scary time it must have been, and being dismissed by a doc who classified you as non-physically ill is mitigated at least by the fact that h/she was an idiot! Ironically, it sounds like the whole thing was an iatrogenic, or doctor caused, illness.
I feel fortunate that my own diagnosis delay was not more serious. I know there are terrible, tragic stories out there due to misdiagnosis and delay of treatment. I wish there was a good way to rate one's doctor! I feel like I'm shooting in the dark most of the time.
Take care, and see ya on other, more positive threads!
Tintx
I'm sorry you both had such a hard, long time obtaining diagnosis and treatment. But I'm glad you posted your experiences, and hope it's helped to share your feelings.
Zoey, your comments confirm for me again just how powerful doctors can be, that they can cause us to doubt ourselves. There's just something wrong with the conversation between doctors and patients when this kind of thing happens.
So, Dennis, your angioedema was due to the staph infection acquired at the site of an accidental break to one of your ribs during the course of gall bladder surgery years before? That's quite a story, and really interesting that your chiro was the one to actually stumble onto the cause of all those problems. What an awful, scary time it must have been, and being dismissed by a doc who classified you as non-physically ill is mitigated at least by the fact that h/she was an idiot! Ironically, it sounds like the whole thing was an iatrogenic, or doctor caused, illness.
I feel fortunate that my own diagnosis delay was not more serious. I know there are terrible, tragic stories out there due to misdiagnosis and delay of treatment. I wish there was a good way to rate one's doctor! I feel like I'm shooting in the dark most of the time.
Take care, and see ya on other, more positive threads!
Tintx
flyonthewall
12-07-2004, 03:26 PM
My neighbor had a three way bypass and was sent home on Amiodarone to regulate his heartbeats. He developed a cough and shortness of breath and his primary was going to put him on antibiotics---the pharmacist said that would kill him! I looked the drug up on the internet and the cough and shortness of breath are side effects of the drug. Then I find out there is iodine in the drug, and he is allergic to iodine! The surgeon, the cardiologist and the PCP---none of them had a clue. grrrrrr!
tintx
12-07-2004, 09:41 PM
Fly,
What a tale, and thank goodness for pharmacists who catch prescribing errors! It's a shame that patients have to check their doctors' work, but it seems a necessity. It's a lot of work, too, when one's not trained in medicine, but if doctors aren't trustworthy practitioners, what else can you do?
Tintx
What a tale, and thank goodness for pharmacists who catch prescribing errors! It's a shame that patients have to check their doctors' work, but it seems a necessity. It's a lot of work, too, when one's not trained in medicine, but if doctors aren't trustworthy practitioners, what else can you do?
Tintx
solardust
12-08-2004, 12:01 AM
Thanx Fly for posting that story,with my heart history, who knows what med I will get next, and I too am allergic to Iodine,goes to show ya , never know,the cure can be worse then the disease,again Thankyou,Diana
kerry1
12-08-2004, 01:28 AM
I am absolutely TERRIFIED of doctors. The only exceptions I'm making are psychiatrists (because I've had good luck with them, and they're trained in bedside manners), ER doctors, and dentists (who are actually kind of wholistic, if you think about it).
I'm not a wimpy, scared type of person. But just the thought of going to a doctor gives me "white coat syndrome". Sheer panic.
I've been treated like an annoying hypochondriac and a nuisance. I've been stared at by so many pairs of ice-cold eyes. I've had terrible chronic illnesses that went on for years because the doctor didn't know how to treat it and didn't want to admit it, or because he was in a hurry. I still feel that my old family doctor hated me. I've solved so many of my medical problems by wandering into a natural-food store and asking the clerk for advice. Or by checking websites like this one. This is not how it should be!! We shouldn't have to rely on websites and clerks!!!
Argggh. I'd rather die of something unknown than see a doctor ever again.
I'm not a wimpy, scared type of person. But just the thought of going to a doctor gives me "white coat syndrome". Sheer panic.
I've been treated like an annoying hypochondriac and a nuisance. I've been stared at by so many pairs of ice-cold eyes. I've had terrible chronic illnesses that went on for years because the doctor didn't know how to treat it and didn't want to admit it, or because he was in a hurry. I still feel that my old family doctor hated me. I've solved so many of my medical problems by wandering into a natural-food store and asking the clerk for advice. Or by checking websites like this one. This is not how it should be!! We shouldn't have to rely on websites and clerks!!!
Argggh. I'd rather die of something unknown than see a doctor ever again.
flyonthewall
12-08-2004, 07:58 AM
Diana, My neighbor says he gets a red bracelet put on when he's in the hospital to alert about the iodine. I think the doctors just can't be bothered reading the fine print about these drugs. He and his wife are getting ready to tear into the cardiologist! Remember that name---Amiodarone.
fly
fly
solardust
12-08-2004, 08:51 AM
Hi Fly, Without a doubt,it will be embedded forever,I think I will also take it one step further, and get one of those braclets,cuz I also am allergic to sulfa drugs,better safe then sorry,I still am shocked by the stories I have been reading ,I mean ya expect a story or two, but it seems everyone of us has a nightmare to tell.Take care, diana
dennisgb
12-08-2004, 11:02 AM
I am allergic to asprin and ibruprophen (really helpful when you have all the pain associated with disk disease).
I have had a number of surgeries over the years, and always have a hand band stating that I am allergic. Every time I have reminded the anastesiologist (jeez these words are hard to spell), and each time they said "Oh @#$&".
They were going to give me something with aspirin in it.
It's important to stay on top of them...
I have had a number of surgeries over the years, and always have a hand band stating that I am allergic. Every time I have reminded the anastesiologist (jeez these words are hard to spell), and each time they said "Oh @#$&".
They were going to give me something with aspirin in it.
It's important to stay on top of them...
tintx
12-08-2004, 08:35 PM
:wave: I'm happy to see the conversation that's been going on, and feel it's especially useful to know where mistakes tend to happen so we can be proactive in preventing them. It's sometimes an obstacle that the culture of medicine tends to make it difficult to advocate as a patient.
I sometimes feel guilty for being critical of doctors and medicine, after all, they are also the source of my potential salvation and have certainly helped me in the past (causing less problems than I started with, I know medicine isn't perfect!) I know I'll keep being highly critical, but I do want to acknowledge there are good, conscientious doctors out there, and hope I have the good fortune to run into them later when I need them. Finding them is another issue.
The whole setup just makes me somewhat paranoid, especially in light of my own medical history. Someone on another thread (can't remember) referred to it as "white coat syndrome." It can certainly be traumatizing when you're dismissed without treatment or diagnosis, prescribed harmful drugs/combinations, suffering setbacks due to surgery that aren't being well managed, etc., etc.
I remember having a Dalkon Shield IUD back in the 70's. I just happened to read an article in Redbook magazine reporting that these devices weren't safe. I was using Planned Parenthood at the time, and went in to have it removed, and had to argue with the doctor about it! He told me they hadn't been removing them, but I insisted he remove mine. And I'm glad I did--later, they were taken off the market for killing women, and the manufacturer, A. H. Robbins, went bankrupt as a result.
Thanks for listening.
Tintx
I sometimes feel guilty for being critical of doctors and medicine, after all, they are also the source of my potential salvation and have certainly helped me in the past (causing less problems than I started with, I know medicine isn't perfect!) I know I'll keep being highly critical, but I do want to acknowledge there are good, conscientious doctors out there, and hope I have the good fortune to run into them later when I need them. Finding them is another issue.
The whole setup just makes me somewhat paranoid, especially in light of my own medical history. Someone on another thread (can't remember) referred to it as "white coat syndrome." It can certainly be traumatizing when you're dismissed without treatment or diagnosis, prescribed harmful drugs/combinations, suffering setbacks due to surgery that aren't being well managed, etc., etc.
I remember having a Dalkon Shield IUD back in the 70's. I just happened to read an article in Redbook magazine reporting that these devices weren't safe. I was using Planned Parenthood at the time, and went in to have it removed, and had to argue with the doctor about it! He told me they hadn't been removing them, but I insisted he remove mine. And I'm glad I did--later, they were taken off the market for killing women, and the manufacturer, A. H. Robbins, went bankrupt as a result.
Thanks for listening.
Tintx
flyonthewall
12-10-2004, 04:09 PM
Diana,
My neighbor and his wife confronted the cardiologist yesterday. He knew Mike was allergic to iodine but he had no idea there was iodine in the pill. He said the drug companies don't tell the doctors everything---they wouldn't sell any drugs. And the FDA lets the drug companies get away with it! The FDA IS the drug companies! We're doomed....
fly
My neighbor and his wife confronted the cardiologist yesterday. He knew Mike was allergic to iodine but he had no idea there was iodine in the pill. He said the drug companies don't tell the doctors everything---they wouldn't sell any drugs. And the FDA lets the drug companies get away with it! The FDA IS the drug companies! We're doomed....
fly
solardust
12-10-2004, 05:52 PM
Fly,Gee's no kidding,and to think they have to list everything in a can of peas , but "drugs" they dont!Wow!Diana
flyonthewall
12-12-2004, 02:31 PM
Diana,
My neighbor confronted his pharmacist, too. The pharmacist didn't even know there was iodine in the Amiodarone! I'm nobody and I read it on the computer. We're all doomed.
fly
My neighbor confronted his pharmacist, too. The pharmacist didn't even know there was iodine in the Amiodarone! I'm nobody and I read it on the computer. We're all doomed.
fly