Discussions By Condition: Medical Errors

Brain tumor NOT Bipolar disorder!!!

Posted In: Medical Errors 21 Replies
  • Posted By: Krystal D
  • September 24, 2009
  • 06:01 PM

PLEASE, PLEASE, PLEASE LISTEN!!!!!!!

While my experience was not exactly the same as the story of Saving Sammy, it is along the same lines. I have a litany of medical issues including an autoimmune disease destroying my thyroid, irregularities with hormones that have still not been FULLY diagnosed or thoroughly understood and the most shocking to me and my husband a tumor in my brain on my pituitary gland. All treatable conditions if properly diagnosed.

8 years ago I was DUMPED INTO THE "MENTAL HEALTH" SYSTEM AND THIS IS THE WORST POSSIBLE THING THAT CAN BE DONE TO A SICK PERSON. Without having any blood tests ran whatsoever that would have shown at the very least the autoimmune disease or thyroid abnormalities and possibly the existence of this tumor I was given the diagnosis of bipolar disorder. I was told to answer the questionnaire considering any and all situations that had ever happened in my life and not what I was like at the age of 25. So when asked questions like have you ever done anything impulsive I honestly wrote yes because as a teenager, and as most teenagers, I had done impulsive things. I explained this to my doctor but as he seemed to have a vested interest in me being bipolar since he was working for the very drug company whose drug he then prescribed he told me it was all indicative of bipolar disorder.

What I am actually dealing with is multi-systemic and still not fully understood but once I was given that diagnosis of bipolar disorder no doctor asked any further questions. I was doped up to the point that I could not function for almost eight years before I finally got a doctor who was able to think outside the box and listen to what I had been saying for years that I was NOT bipolar though always med compliant and realized that the things that were giving me the symptoms of this disease were the medications and to add insult to injury the medications either made the real disease that already existed worse or created new problems that did not exist previously. WHAT I REALLY WANT PEOPLE TO UNDERSTAND IS THAT ONCE YOU ARE DUMPED INTO THAT "MENTAL HEALTH" SYSTEM NO ONE ASKS IF THAT INITIAL DIAGNOSIS WAS PROPER, ACCURATE NOR WILL THEY LOOK FOR SOMETHING ELSE BEING THE ROOT CAUSE. This is an abuse that happens far too often and the stigma that exists for mental health patients is still extreme. THIS IS SOMETHING THAT IS ROBBING PEOPLE OF THEIR LIVES.

The fact that my doctor failed to run a simple $20 blood test that would have at the very least shown the thyroid disease cost me 8 years of my life after which I have only within the last couple of months been diagnosed with the autoimmune disease and the tumor and I am still not well. THIS NEEDS TO STOP!!! PSYCHIATRISTS SHOULD BE OBLIGATED TO EVALUATE AND ELIMINATE PHYSIOLOGICAL CAUSES THAT ARE KNOWN AND OBVIOUS FOR DISEASES SUCH AS DEPRESSION, OCD, ADD/ADHD BEFORE THEY ARE ALLOWED TO LABEL SOMEONE WITH A LABEL THAT WILL FOLLOW THEM THE REST OF THEIR LIVES AND UNFAIRLY AND INACCURATELY INFLUENCE OTHER DOCTORS IN A WAY THAT RESULTS IN THE PATIENT RECEIVING SUBSTANDARD IF ANY CARE OR FURTHER INVESTIGATION!

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21 Replies:

  • PLEASE, PLEASE, PLEASE LISTEN!!!!!!! While my experience was not exactly the same as the story of Saving Sammy, it is along the same lines. I have a litany of medical issues including an autoimmune disease destroying my thyroid, irregularities with hormones that have still not been FULLY diagnosed or thoroughly understood and the most shocking to me and my husband a tumor in my brain on my pituitary gland. All treatable conditions if properly diagnosed. 8 years ago I was DUMPED INTO THE "MENTAL HEALTH" SYSTEM AND THIS IS THE WORST POSSIBLE THING THAT CAN BE DONE TO A SICK PERSON. Without having any blood tests ran whatsoever that would have shown at the very least the autoimmune disease or thyroid abnormalities and possibly the existence of this tumor I was given the diagnosis of bipolar disorder. I was told to answer the questionnaire considering any and all situations that had ever happened in my life and not what I was like at the age of 25. So when asked questions like have you ever done anything impulsive I honestly wrote yes because as a teenager, and as most teenagers, I had done impulsive things. I explained this to my doctor but as he seemed to have a vested interest in me being bipolar since he was working for the very drug company whose drug he then prescribed he told me it was all indicative of bipolar disorder. What I am actually dealing with is multi-systemic and still not fully understood but once I was given that diagnosis of bipolar disorder no doctor asked any further questions. I was doped up to the point that I could not function for almost eight years before I finally got a doctor who was able to think outside the box and listen to what I had been saying for years that I was NOT bipolar though always med compliant and realized that the things that were giving me the symptoms of this disease were the medications and to add insult to injury the medications either made the real disease that already existed worse or created new problems that did not exist previously. WHAT I REALLY WANT PEOPLE TO UNDERSTAND IS THAT ONCE YOU ARE DUMPED INTO THAT "MENTAL HEALTH" SYSTEM NO ONE ASKS IF THAT INITIAL DIAGNOSIS WAS PROPER, ACCURATE NOR WILL THEY LOOK FOR SOMETHING ELSE BEING THE ROOT CAUSE. This is an abuse that happens far too often and the stigma that exists for mental health patients is still extreme. THIS IS SOMETHING THAT IS ROBBING PEOPLE OF THEIR LIVES. The fact that my doctor failed to run a simple $20 blood test that would have at the very least shown the thyroid disease cost me 8 years of my life after which I have only within the last couple of months been diagnosed with the autoimmune disease and the tumor and I am still not well. THIS NEEDS TO STOP!!! PSYCHIATRISTS SHOULD BE OBLIGATED TO EVALUATE AND ELIMINATE PHYSIOLOGICAL CAUSES THAT ARE KNOWN AND OBVIOUS FOR DISEASES SUCH AS DEPRESSION, OCD, ADD/ADHD BEFORE THEY ARE ALLOWED TO LABEL SOMEONE WITH A LABEL THAT WILL FOLLOW THEM THE REST OF THEIR LIVES AND UNFAIRLY AND INACCURATELY INFLUENCE OTHER DOCTORS IN A WAY THAT RESULTS IN THE PATIENT RECEIVING SUBSTANDARD IF ANY CARE OR FURTHER INVESTIGATION!AMEN!!!! Pituitary disorders are excrutiating in SO many ways to the sufferer, and are life changing. I am hypopit due to a condition called Sheehan's Syndrome... which has taken 12 years of my life searching for a diagnosis. Thank God that I found a good and thorough doctor who DOES think out of the box and was able to find the cause of the numerous and some life threatening symptoms I was having. Although it is a rough road, it is one that can be helped. I pray that your tumor is one that is easily dealt with... and be SURE to make your doctor test for ALL pituitary function as the thyroid and the adrenal involvement can be life threatening. Once you have all of the hormones being supplemented, you can lead a somewhat "new normal" kind of life. A good endocrinologist is hard to come by. I have had 3 in the past tell me that my problems were depression, etc... but definitely NOT my pituitary.... come to find out they were all wrong, as the progression of loss of pituitary function can be slow and they were not looking at the whole picture. Best wishes to you in your journey... my prayers are with you.
    Anonymous 42789 Replies
    • September 24, 2009
    • 09:45 PM
    • 0
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  • AMEN!!!! Pituitary disorders are excrutiating in SO many ways to the sufferer, and are life changing. I am hypopit due to a condition called Sheehan's Syndrome... which has taken 12 years of my life searching for a diagnosis. Thank God that I found a good and thorough doctor who DOES think out of the box and was able to find the cause of the numerous and some life threatening symptoms I was having. Although it is a rough road, it is one that can be helped. I pray that your tumor is one that is easily dealt with... and be SURE to make your doctor test for ALL pituitary function as the thyroid and the adrenal involvement can be life threatening. Once you have all of the hormones being supplemented, you can lead a somewhat "new normal" kind of life. A good endocrinologist is hard to come by. I have had 3 in the past tell me that my problems were depression, etc... but definitely NOT my pituitary.... come to find out they were all wrong, as the progression of loss of pituitary function can be slow and they were not looking at the whole picture. Best wishes to you in your journey... my prayers are with you.My doctor is HORRIBLE but he is the only one in my area who even deals with this. He isn't testing for any other pituitary issues or adrenal issues. We have begged and he just keeps saying there is no need. He says they found the tumor and are treating it and there is no need to do anything further. He isn't even running a second MRI to make sure the tumor is shrinking! PLEASE tell me what I need to be asking about and for. They have always told me it was in my head and depression, etc... And I am bad enough now that I have been living with suicidal depression for about 2 years. It gets harder and harder to hang on every day. I don't know how much longer I have in me and I can't get anyone to listen or help. The doctor that I have who thinks outside the box is my psychiatrist and this is out of his field of expertise and he wants to help but doesn't know what to do either. I am literally fighting for my life on a daily basis and no one will help me!! I don't want to die...I just can't live with so much pain anymore. Anyone with any idea PLEASE send it my way!!!
    Krystal D 26 Replies
    • September 25, 2009
    • 05:43 AM
    • 0
    Flag this Response
  • AMEN!!!! Pituitary disorders are excrutiating in SO many ways to the sufferer, and are life changing. I am hypopit due to a condition called Sheehan's Syndrome... which has taken 12 years of my life searching for a diagnosis. Thank God that I found a good and thorough doctor who DOES think out of the box and was able to find the cause of the numerous and some life threatening symptoms I was having. Although it is a rough road, it is one that can be helped. I pray that your tumor is one that is easily dealt with... and be SURE to make your doctor test for ALL pituitary function as the thyroid and the adrenal involvement can be life threatening. Once you have all of the hormones being supplemented, you can lead a somewhat "new normal" kind of life. A good endocrinologist is hard to come by. I have had 3 in the past tell me that my problems were depression, etc... but definitely NOT my pituitary.... come to find out they were all wrong, as the progression of loss of pituitary function can be slow and they were not looking at the whole picture. Best wishes to you in your journey... my prayers are with you.My doctor is HORRIBLE. And unfortunately is literally the only doctor in my area who will even treat this condition. All other endocrinologists here (and I have seen many here and even went to Mayo Clinic in Minnesota) focus solely on diabetes. My doctor will not test for anything further. He found the tumor and as far as he is concerned that is all there is to it. I have begged him to look at all pituitary functions as well as adrenal issues, etc... and he told me there was no point. He is even now saying there is no point in doing a follow up MRI since the bloodwork looks like the tumor is shrinking. The problem with this is that I have had that same test ran over the years and it was never out of the normal range except the one day I saw him which prompted him to run the first MRI and find the tumor. I had literally had the same test ran three weeks prior to him running the test and it showed as perfectly normal. Once again a month after his finding it being extremely elevated it is back to normal and my doctor who I am doing good to get him to listen to me for 30 seconds won't hear what I am saying that the blood work is NOT a reliable indicator in my case. I have been living with this and so many other extremely painful issues for so long I don't have much energy left! I can't live like this much longer and no one will help me. Please if you know...what questions should I be asking, what tests should I be asking for, what needs to be done? I know more is wrong than just what he is telling me, I have researched some of it myself and found other things that should be looked for and at but I don't know what to do and my doctor won't listen. I know my body and I know my mind and I know that there is more here than what I am being treated for! I am fighting for my life on a daily basis and it is like I am in the middle of a crowd screaming for help at the top of my lungs and everyone just continues to pass by as if they don't see or hear me. Please anyone who has any input whatsoever I welcome it!!!!!!!!!!
    Krystal D 26 Replies
    • September 25, 2009
    • 05:24 PM
    • 0
    Flag this Response
  • My doctor is HORRIBLE. And unfortunately is literally the only doctor in my area who will even treat this condition. All other endocrinologists here (and I have seen many here and even went to Mayo Clinic in Minnesota) focus solely on diabetes. My doctor will not test for anything further. He found the tumor and as far as he is concerned that is all there is to it. I have begged him to look at all pituitary functions as well as adrenal issues, etc... and he told me there was no point. He is even now saying there is no point in doing a follow up MRI since the bloodwork looks like the tumor is shrinking. The problem with this is that I have had that same test ran over the years and it was never out of the normal range except the one day I saw him which prompted him to run the first MRI and find the tumor. I had literally had the same test ran three weeks prior to him running the test and it showed as perfectly normal. Once again a month after his finding it being extremely elevated it is back to normal and my doctor who I am doing good to get him to listen to me for 30 seconds won't hear what I am saying that the blood work is NOT a reliable indicator in my case. I have been living with this and so many other extremely painful issues for so long I don't have much energy left! I can't live like this much longer and no one will help me. Please if you know...what questions should I be asking, what tests should I be asking for, what needs to be done? I know more is wrong than just what he is telling me, I have researched some of it myself and found other things that should be looked for and at but I don't know what to do and my doctor won't listen. I know my body and I know my mind and I know that there is more here than what I am being treated for! I am fighting for my life on a daily basis and it is like I am in the middle of a crowd screaming for help at the top of my lungs and everyone just continues to pass by as if they don't see or hear me. Please anyone who has any input whatsoever I welcome it!!!!!!!!!! Is there ANY other doctor that you can go to? One that will actually listen and take into account your history? By the sounds of it this doctor doesn't care much about you and you should find someone who actually cares. I'm sure any other doctor will order the tests you need if you ask for them even if it's not in their expertise. It might be worth a try??
    mirroredmalice 4 Replies
    • October 3, 2009
    • 07:16 AM
    • 0
    Flag this Response
  • Is there ANY other doctor that you can go to? One that will actually listen and take into account your history? By the sounds of it this doctor doesn't care much about you and you should find someone who actually cares. I'm sure any other doctor will order the tests you need if you ask for them even if it's not in their expertise. It might be worth a try??Thank you very much for your response! And you are absolutely right. What is missing with this doctor is the human element...the part where you care about the welfare and quality of life of another human being. Unfortunately I am in an odd situation with this. This is literally the only endocrinologist in my area who will deal with anything other than diabetes. I have been to many others before I finally found this guy and every one of them said something along the lines of "yes, I think this is a problem in the endocrine system but its not my specialty (diabetes...apparently now specialists have specialties within specialties). And I think you should probably have (xyz) checked but I'm not going to run the tests." The first time I heard that my jaw dropped. After the tenth I was overwhelmingly disappointed but accustomed to it. Most all of them recommended this guy if they would recommend anyone. I asked and begged and cried and said if you won't run the tests who will and most of them either gave me this guy's name or said that they really couldn't think of anyone in this area who would take on a case that involved what I was dealing with. And this doctor, of course being the only doctor in the area who deals with the rest of the endocrine system, as you can imagine is extremely difficult to get into see. I think the first time it took me a couple of months just to get in to see him.So this is the only doc in my area that treats my condition and my other doctors are more concerned about stepping on another doctor's toes (ego) by running tests that are in "his specialty" than they really are about making sure I have a complete work up, so they always tell me to just go back and ask him. They generally say something to the effect of I would hate for a doctor outside of my specialty to do my job for me when he/she doesn't know what they are doing so I don't really feel comfortable doing that myself. And this has come from doctors that I did and do really trust and respect and it surprised me quite a bit but that is what I have been dealing with for about 2 years now. At least that is how long I have been looking for a doctor to put this whole puzzle together. I have a couple of doctors who do listen to me but there is this lovely code that they all seem to live by and none of them want to step outside of their specialty for fear of offending the specialist that is dropping the ball. I thank you very much for your comment!! Believe me I have tried but the reality that has become overwhelmingly apparent over the last few months especially is that I am going to have to go to a completely different area and try to find a doctor that will run the necessary tests.I even drove 1,000 miles to go to the Mayo clinic. I am willing to try anything obviously. The Mayo clinic was the worst experience of all the doctors I have dealt with but that is an entirely different story. I went up there and gave a detailed family history and detailed medical history of my own which none of them looked at. They would just flip through the pages not really reading anything the same way you would if you were looking at a book in the book store. And then continued to treat me with absolute disrespect and from one of the doctors complete contempt and ridicule. I left his office just broken and in tears. And they missed the brain tumor. I came to them asking for tests and giving them all the pertinent information they needed to find it and it was only after begging for them to please run tests that were not just a repeat of what had already been run that they would even in their words "humor me" and run a few extra blood tests. Otherwise they re-ran the exact same tests that had been done just weeks before in my hometown and gave me a psych consult. They tole me it was just all in my head. While they were right...what was in my head was a TUMOR.Ironically after I finished my undergraduate degree and right before I got so sick, I was applying to medical school myself and working in a hospital as a nurse's aide for clinical experience. But thank you again for your suggestion and response!!!! I truly appreciate it and when I started this whole journey I honestly thought that something like what you suggested would work. It may just be the area that I am in or this may be something that is systemic in the medical field. I don't know. But the thing that seems to be the biggest concern to the doctors I have dealt with is that they give the other doctor the benefit of the doubt and not "step on his toes." I have heard that phrase over and over ad nauseum! And most of them will come right out and admit that even though it isn't their specialty they know that this should be further investigated. They just want him to do it and he's not gonna. I have tried everything right up to just writing him a check in advance for the tests because of his concerns that insurance wouldn't pay for the tests. So far, nothing has worked to change his mind or motivate him.
    Krystal D 26 Replies
    • October 3, 2009
    • 02:34 PM
    • 0
    Flag this Response
  • Is there ANY other doctor that you can go to? One that will actually listen and take into account your history? By the sounds of it this doctor doesn't care much about you and you should find someone who actually cares. I'm sure any other doctor will order the tests you need if you ask for them even if it's not in their expertise. It might be worth a try??Thank you very much for your response! And you are absolutely right. What is missing with this doctor is the human element...the part where you care about the welfare and quality of life of another human being. Unfortunately I am in an odd situation with this. This is literally the only endocrinologist in my area who will deal with anything other than diabetes. I have been to many others before I finally found this guy and every one of them said something along the lines of "yes, I think this is a problem in the endocrine system but its not my specialty (diabetes...apparently now specialists have specialties within specialties). And I think you should probably have (xyz) checked but I'm not going to run the tests." The first time I heard that my jaw dropped. After the tenth I was overwhelmingly disappointed but accustomed to it. Most all of them recommended this guy if they would recommend anyone. I asked and begged and cried and said if you won't run the tests who will and most of them either gave me this guy's name or said that they really couldn't think of anyone in this area who would take on a case that involved what I was dealing with. And this doctor, of course being the only doctor in the area who deals with the rest of the endocrine system, as you can imagine is extremely difficult to get into see. I think the first time it took me a couple of months just to get in to see him.So this is the only doc in my area that treats my condition and my other doctors are more concerned about stepping on another doctor's toes (ego) by running tests that are in "his specialty" than they really are about making sure I have a complete work up, so they always tell me to just go back and ask him. They generally say something to the effect of I would hate for a doctor outside of my specialty to do my job for me when he/she doesn't know what they are doing so I don't really feel comfortable doing that myself. And this has come from doctors that I did and do really trust and respect and it surprised me quite a bit but that is what I have been dealing with for about 2 years now. At least that is how long I have been looking for a doctor to put this whole puzzle together. I have a couple of doctors who do listen to me but there is this lovely code that they all seem to live by and none of them want to step outside of their specialty for fear of offending the specialist that is dropping the ball. I thank you very much for your comment!! Believe me I have tried but the reality that has become overwhelmingly apparent over the last few months especially is that I am going to have to go to a completely different area and try to find a doctor that will run the necessary tests.I even drove 1,000 miles to go to the Mayo clinic. I am willing to try anything obviously. The Mayo clinic was the worst experience of all the doctors I have dealt with but that is an entirely different story. I went up there and gave a detailed family history and detailed medical history of my own which none of them looked at. They would just flip through the pages not really reading anything the same way you would if you were looking at a book in the book store. And then continued to treat me with absolute disrespect and from one of the doctors complete contempt and ridicule. I left his office just broken and in tears. And they missed the brain tumor. I came to them asking for tests and giving them all the pertinent information they needed to find it and it was only after begging for them to please run tests that were not just a repeat of what had already been run that they would even in their words "humor me" and run a few extra blood tests. Otherwise they re-ran the exact same tests that had been done just weeks before in my hometown and gave me a psych consult. They tole me it was just all in my head. While they were right...what was in my head was a TUMOR.Ironically after I finished my undergraduate degree and right before I got so sick, I was applying to medical school myself and working in a hospital as a nurse's aide for clinical experience. I thank you again sincerely for your suggestion and response and taking the time to submit it!!!! I truly appreciate it and when I started this whole journey I honestly thought that something like what you suggested would work. It may just be the area that I am in or this may be something that is systemic in the medical field. I don't know. But the thing that seems to be the biggest concern to the doctors I have dealt with is that they give the other doctor the benefit of the doubt and not "step on his toes." I have heard that phrase over and over ad nauseum! And most of them will come right out and admit that even though it isn't their specialty they know that this should be further investigated. They just want him to do it and he's not gonna. I have tried everything right up to just writing him a check in advance for the tests because of his concerns that insurance wouldn't pay for the tests. So far, nothing has worked to change his mind or motivate him.
    Krystal D 26 Replies
    • October 3, 2009
    • 02:36 PM
    • 0
    Flag this Response
  • Thank you very much for your response! And you are absolutely right. What is missing with this doctor is the human element...the part where you care about the welfare and quality of life of another human being. Unfortunately I am in an odd situation with this. This is literally the only endocrinologist in my area who will deal with anything other than diabetes. I have been to many others before I finally found this guy and every one of them said something along the lines of "yes, I think this is a problem in the endocrine system but its not my specialty (diabetes...apparently now specialists have specialties within specialties). And I think you should probably have (xyz) checked but I'm not going to run the tests." The first time I heard that my jaw dropped. After the tenth I was overwhelmingly disappointed but accustomed to it. Most all of them recommended this guy if they would recommend anyone. I asked and begged and cried and said if you won't run the tests who will and most of them either gave me this guy's name or said that they really couldn't think of anyone in this area who would take on a case that involved what I was dealing with. And this doctor, of course being the only doctor in the area who deals with the rest of the endocrine system, as you can imagine is extremely difficult to get into see. I think the first time it took me a couple of months just to get in to see him. So this is the only doc in my area that treats my condition and my other doctors are more concerned about stepping on another doctor's toes (ego) by running tests that are in "his specialty" than they really are about making sure I have a complete work up, so they always tell me to just go back and ask him. They generally say something to the effect of I would hate for a doctor outside of my specialty to do my job for me when he/she doesn't know what they are doing so I don't really feel comfortable doing that myself. And this has come from doctors that I did and do really trust and respect and it surprised me quite a bit but that is what I have been dealing with for about 2 years now. At least that is how long I have been looking for a doctor to put this whole puzzle together. I have a couple of doctors who do listen to me but there is this lovely code that they all seem to live by and none of them want to step outside of their specialty for fear of offending the specialist that is dropping the ball. I thank you very much for your comment!! Believe me I have tried but the reality that has become overwhelmingly apparent over the last few months especially is that I am going to have to go to a completely different area and try to find a doctor that will run the necessary tests. I even drove 1,000 miles to go to the Mayo clinic. I am willing to try anything obviously. The Mayo clinic was the worst experience of all the doctors I have dealt with but that is an entirely different story. I went up there and gave a detailed family history and detailed medical history of my own which none of them looked at. They would just flip through the pages not really reading anything the same way you would if you were looking at a book in the book store. And then continued to treat me with absolute disrespect and from one of the doctors complete contempt and ridicule. I left his office just broken and in tears. And they missed the brain tumor. I came to them asking for tests and giving them all the pertinent information they needed to find it and it was only after begging for them to please run tests that were not just a repeat of what had already been run that they would even in their words "humor me" and run a few extra blood tests. Otherwise they re-ran the exact same tests that had been done just weeks before in my hometown and gave me a psych consult. They tole me it was just all in my head. While they were right...what was in my head was a TUMOR. Ironically after I finished my undergraduate degree and right before I got so sick, I was applying to medical school myself and working in a hospital as a nurse's aide for clinical experience. I thank you again sincerely for your suggestion and response and taking the time to submit it!!!! I truly appreciate it and when I started this whole journey I honestly thought that something like what you suggested would work. It may just be the area that I am in or this may be something that is systemic in the medical field. I don't know. But the thing that seems to be the biggest concern to the doctors I have dealt with is that they give the other doctor the benefit of the doubt and not "step on his toes." I have heard that phrase over and over ad nauseum! And most of them will come right out and admit that even though it isn't their specialty they know that this should be further investigated. They just want him to do it and he's not gonna. I have tried everything right up to just writing him a check in advance for the tests because of his concerns that insurance wouldn't pay for the tests. So far, nothing has worked to change his mind or motivate him. That's awful... I'm so sorry you're having such a hard time and that these people seem to be more worried about money than your well-being. I sincerely hope that it is just your area and not something which all medical 'professionals' abide by. I don't really have any other advice for you as it seems you've done everything I would do!! I supposed just keep trying.... keep asking your doctor for the tests and maybe he will eventually give in. Otherwise so on a wider search for someone who will actually listen to you. Otherwise if you get any worse you could sue your doctor hehe!!
    mirroredmalice 4 Replies
    • October 4, 2009
    • 07:43 AM
    • 0
    Flag this Response
  • That's awful... I'm so sorry you're having such a hard time and that these people seem to be more worried about money than your well-being. I sincerely hope that it is just your area and not something which all medical 'professionals' abide by. I don't really have any other advice for you as it seems you've done everything I would do!! I supposed just keep trying.... keep asking your doctor for the tests and maybe he will eventually give in. Otherwise so on a wider search for someone who will actually listen to you. Otherwise if you get any worse you could sue your doctor hehe!!Thanks. Yah, that's pretty much what I'm doing. And we are looking at trying to go to somewhere that specializes in this stuff. It is just hard because it is so complex and expensive.Thanks for your reply!!
    Krystal D 26 Replies
    • October 5, 2009
    • 00:45 AM
    • 0
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  • Thanks. Yah, that's pretty much what I'm doing. And we are looking at trying to go to somewhere that specializes in this stuff. It is just hard because it is so complex and expensive.Thanks for your reply!!Hi, Have you been to a good naturopath that can help with your diet which will be a big help to you and counselling. I wouldn't go to doctor's for what you have as they aren't trained to fix things from the root cause, only to mask problems and make people sick.
    Anonymous 42789 Replies
    • November 21, 2009
    • 05:13 AM
    • 0
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  • Hi, Have you been to a good naturopath that can help with your diet which will be a big help to you and counselling. I wouldn't go to doctor's for what you have as they aren't trained to fix things from the root cause, only to mask problems and make people sick. interesting that you mention that b/c the newest development is that they put me on medication for insulin resistance and it has worked wonders...better than anything in the last 8 years. I've been in counseling for a decade. I don't live in an area where alternative medicine is prevalent. What would you recommend? I have been to an accupuncturist but that is about all that is available here. what kind of holistic healer would you recommend? I agree about the ills of "western medicine". I had one friend who called them "parts" doctors. No one will look at this as a complex and multi-systemic problem which is what it is proving to be. I just keep getting shuffled from specialist to specialist.
    Krystal D 26 Replies
    • November 22, 2009
    • 02:18 AM
    • 0
    Flag this Response
  • HelloI was really shocked after reading this topic!!!!Doctors put you in a mental hospital without running blood tests??Such doctors should be taken away there permission to work.I hope and wish for you that your pituitary tumor is benign...Doctors MUST always rule out endocrine,autoimmune,infectious (borreliosis etc),neurological and brain tumor diseases after giving the diagnosis of mental illness.
    undiagnosed022 11 Replies
    • November 22, 2009
    • 03:58 AM
    • 0
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  • Hello I was really shocked after reading this topic!!!!Doctors put you in a mental hospital without running blood tests??Such doctors should be taken away there permission to work. I hope and wish for you that your pituitary tumor is benign... Doctors MUST always rule out endocrine,autoimmune,infectious (borreliosis etc),neurological and brain tumor diseases after giving the diagnosis of mental illness. Thank you for your statement! I was shocked when we finally figured out what was wrong also. Or especially after the first doc that told me if they had ran a $20 blood test the last 8 years of misery could have been avoided or at least I could have been on the road to better health instead of in a drug addled haze b/c of all the meds they had me on! I agree, depression is such a common symptom other things should be ruled out before you drop someone into the mental health system!
    Krystal D 26 Replies
    • November 22, 2009
    • 09:26 PM
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  • interesting that you mention that b/c the newest development is that they put me on medication for insulin resistance and it has worked wonders...better than anything in the last 8 years. I've been in counseling for a decade. I don't live in an area where alternative medicine is prevalent. What would you recommend? I have been to an accupuncturist but that is about all that is available here. what kind of holistic healer would you recommend? I agree about the ills of "western medicine". I had one friend who called them "parts" doctors. No one will look at this as a complex and multi-systemic problem which is what it is proving to be. I just keep getting shuffled from specialist to specialist. Hello, I just came across your post and was wondering what meds did they put you on Meformin??? I've been struggling with what I think and feel is a misdiagnosis as well... I'm also considering going to the Mayo clinic and called to make an appointment months ago and then decided to see a specialist in my area before making that leap. It is interesting that they found a pituitary tumor because I asked for testing to be done to rule that out and was refused! I'm having seizures, extreme mood swings, adrenal exhaustion, problems with potassium/electrotytes, blood pressure spikes, etc...and these problems get worse after ovulation! After ovulation I start experiencing psychosis, blood pressure spikes, etc... Is the Metformin supposed to somehow regulate the pituitary?
    ohfaithful 68 Replies
    • November 30, 2009
    • 08:40 AM
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  • Hello, I just came across your post and was wondering what meds did they put you on Meformin??? I've been struggling with what I think and feel is a misdiagnosis as well... I'm also considering going to the Mayo clinic and called to make an appointment months ago and then decided to see a specialist in my area before making that leap. It is interesting that they found a pituitary tumor because I asked for testing to be done to rule that out and was refused! I'm having seizures, extreme mood swings, adrenal exhaustion, problems with potassium/electrotytes, blood pressure spikes, etc...and these problems get worse after ovulation! After ovulation I start experiencing psychosis, blood pressure spikes, etc... Is the Metformin supposed to somehow regulate the pituitary? I don't know what to tell you other than I begged for the same testing for years before they finally did it and found the tumor. it of course depends on where you are and what kind of healthcare is available to you. what you are going through sounds a lot like mine! stuff with everything going down hill after ovulation and everything. i dread those two weeks of the month. I personally wouldn't recommend the Mayo Clinic. My husband and I went there from Oklahoma. It was a very expensive trip and all they did was re-run the exact same tests that had already been done here and send me to a psychiatrist despite me begging them to investigate further. of course I have heard it is highly dependent on what doctor you get into. but a good friend had a very similar experience years ago and was just finally diagnosed here with a genetic disease. my doctor said he had, had enough patients who had problems with Mayo that he won't refer anyone there anymore. the doctors I had were condescending, uncooperative and some of them just cruel in the way they dealt with me. one wouldn't let me speak and just raised his voice and cut me off every time I tried. he would ask me if I wanted to talk or if I wanted his expert opinion which was that it was all in my head. Mayo missed the pituitary tumor. a doctor here in Oklahoma found it. So for me personally it was a horrible experience!! they still haven't figured out what all is wrong with me. there is the tumor. there are issues with my adrenal glands. there are the extremely painful periods and the major depression and mood swings that come with and just before. it seems to be complex and multi-systemic and no one can seem to put the pieces together to figure out how to treat it. the metformin was a hail mary. the doc didn't know what else to do but noticed I showed signs of insulin resistance. it has helped a lot. it has also regulated my periods. i have one doctor that seems to understand some better than the others what is going on. he thinks it is a sodium imbalance and that gets down to the cellular level. well, i guess everything does if you think about it but they hadn't been treating it that way. the metformin has helped like I said until they got me on a dose that was too high and it totally threw my electrolytes out of balance and I almost ended up in the hospital. but no it has nothing to do with managing the tumor. it is a completely different issue. thing is, after doing a lot of my own research and putting that together with what the docs have said it seems that if one thing goes wrong in the endocrine system (like a pituitary tumor or adrenal fatigue) it causes a cascade and everything just gets jacked up for lack of a better phrase. let me know if any of this has been helpful and please let me know how you are doing and if they figure out what is wrong. my email (and I don't check this one except maybe once a week so if I don't respond immediately don't be surprised) is krystalline1717@yahoo.com if you want to talk privately I would be happy to. that way if I find anything out that might be helpful I can share it with you and vice versa. I wish you luck!! I know how miserable what you are going throug is!!
    Krystal D 26 Replies
    • December 1, 2009
    • 01:07 AM
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  • I don't know what to tell you other than I begged for the same testing for years before they finally did it and found the tumor. it of course depends on where you are and what kind of healthcare is available to you. what you are going through sounds a lot like mine! stuff with everything going down hill after ovulation and everything. i dread those two weeks of the month. I personally wouldn't recommend the Mayo Clinic. My husband and I went there from Oklahoma. It was a very expensive trip and all they did was re-run the exact same tests that had already been done here and send me to a psychiatrist despite me begging them to investigate further. of course I have heard it is highly dependent on what doctor you get into. but a good friend had a very similar experience years ago and was just finally diagnosed here with a genetic disease. my doctor said he had, had enough patients who had problems with Mayo that he won't refer anyone there anymore. the doctors I had were condescending, uncooperative and some of them just cruel in the way they dealt with me. one wouldn't let me speak and just raised his voice and cut me off every time I tried. he would ask me if I wanted to talk or if I wanted his expert opinion which was that it was all in my head. Mayo missed the pituitary tumor. a doctor here in Oklahoma found it. So for me personally it was a horrible experience!! they still haven't figured out what all is wrong with me. there is the tumor. there are issues with my adrenal glands. there are the extremely painful periods and the major depression and mood swings that come with and just before. it seems to be complex and multi-systemic and no one can seem to put the pieces together to figure out how to treat it. the metformin was a hail mary. the doc didn't know what else to do but noticed I showed signs of insulin resistance. it has helped a lot. it has also regulated my periods. i have one doctor that seems to understand some better than the others what is going on. he thinks it is a sodium imbalance and that gets down to the cellular level. well, i guess everything does if you think about it but they hadn't been treating it that way. the metformin has helped like I said until they got me on a dose that was too high and it totally threw my electrolytes out of balance and I almost ended up in the hospital. but no it has nothing to do with managing the tumor. it is a completely different issue. thing is, after doing a lot of my own research and putting that together with what the docs have said it seems that if one thing goes wrong in the endocrine system (like a pituitary tumor or adrenal fatigue) it causes a cascade and everything just gets jacked up for lack of a better phrase. let me know if any of this has been helpful and please let me know how you are doing and if they figure out what is wrong. my email (and I don't check this one except maybe once a week so if I don't respond immediately don't be surprised) is krystalline1717@yahoo.com if you want to talk privately I would be happy to. that way if I find anything out that might be helpful I can share it with you and vice versa. I wish you luck!! I know how miserable what you are going throug is!! Krystal, I find it rather odd that you are talking about your hormonal issues as well. For a while now, I suspected that this was hormonal. However, getting anyone to cooperate and do any testing has been painful! The first time around I saw about 8 physicians, after I begged my psychiastrist to do the testing...all my female hormones were too low! Second time around I ordered the testing online and took the results to seven doctors before anyone would sign for hormones. The minute that I took the hormones in the luteal phase of my cycle the psychosis stopped. I had a couple of months where I thought I had been reborn...then my blood pressure started spiking, blood sugars spiking, and I coudn't take them anymore so now I'm back at square one... Trying to convince doctors to test you when you've been given this diagnosis and to think outside the box has been truely a nightmare...it's like waking up in someone else's body and life every day and not being able to get out! On top of that people are very judgemental and you lose your friends because they get tired of not knowing what to do... If I were you I would get my hormones checked. Since you still have a period, have your estrogen, progesterone, and testosterone checked on days 19, 20, or 21 of your cycle since that is when your symptoms are worse. On top of that I have seizures, and I was having all kinds of spastic brain activity often feeling like I was having a seizure. I've noticed since starting the B12 that I don't have those anymore so that has helped with those and painful leg, arm and hand numbness and tingling. I'm sorry to hear about your experience at the Mayo clinic. Unfortunately, that has pretty much been my experience here with MOST of the physicians! I decided on seeing someone locally instead of the Mayo clinic because it was much more economical. I'm not sure what my next step is, however, because I know as long as I'm having the blood pressure and blood sugar issues she will not prescribe them. It really has been like a bad dream. Thanks for the friend invite and I look forward to talking with you soon! Hopefully one of us will be able to find someone to help...
    ohfaithful 68 Replies
    • December 1, 2009
    • 05:17 AM
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  • Krystal, I find it rather odd that you are talking about your hormonal issues as well. For a while now, I suspected that this was hormonal. However, getting anyone to cooperate and do any testing has been painful! The first time around I saw about 8 physicians, after I begged my psychiastrist to do the testing...all my female hormones were too low! Second time around I ordered the testing online and took the results to seven doctors before anyone would sign for hormones. The minute that I took the hormones in the luteal phase of my cycle the psychosis stopped. I had a couple of months where I thought I had been reborn...then my blood pressure started spiking, blood sugars spiking, and I coudn't take them anymore so now I'm back at square one... Trying to convince doctors to test you when you've been given this diagnosis and to think outside the box has been truely a nightmare...it's like waking up in someone else's body and life every day and not being able to get out! On top of that people are very judgemental and you lose your friends because they get tired of not knowing what to do... If I were you I would get my hormones checked. Since you still have a period, have your estrogen, progesterone, and testosterone checked on days 19, 20, or 21 of your cycle since that is when your symptoms are worse. On top of that I have seizures, and I was having all kinds of spastic brain activity often feeling like I was having a seizure. I've noticed since starting the B12 that I don't have those anymore so that has helped with those and painful leg, arm and hand numbness and tingling. I'm sorry to hear about your experience at the Mayo clinic. Unfortunately, that has pretty much been my experience here with MOST of the physicians! I decided on seeing someone locally instead of the Mayo clinic because it was much more economical. I'm not sure what my next step is, however, because I know as long as I'm having the blood pressure and blood sugar issues she will not prescribe them. It really has been like a bad dream. Thanks for the friend invite and I look forward to talking with you soon! Hopefully one of us will be able to find someone to help... yes, my hormones are completely screwed up but nothing is being done about it. my different estrogen hormones (estradiol, estrone (sp?), etc...) are totally messed up. one shows levels that are menopausal and another is in the levels of a pre-buscent female. I know exactly what you are talking about with friends! I have been sick so long. People get sick of hearing about it or sick of you not always being able to go out when they want to so they just quit calling. you definitely find out who your real friends are and I was very surprised and disappointed with the way some of those things turned out! and it took me years to get a doctor to even run the blood tests. and even worse...the first time they ran them they were normal. and its so funny that you said that b/c it was my psychiatrist who has been my champion the whole way telling other doctors that it ISN'T a psychiatric issue! he was the one who ran a lot of these tests that got other doctors to pay attention. and I know exactly what you mean also about it feeling like you are living someone else's life. like this can't possibly be happening to me. I was 25 when it all started. I just feel like I am living a nightmare I can't wake up from and my body has completely turned against me. thank you for the tip on when to get my hormones checked. I will try that and see what results I get. it is really late right now and I can't think but I believe some doctor asked me about numbness. I have severe leg and back pain but not numbness. I can't remember what disease/disorder or whatever they were looking for when they asked that but I will ask my husband if he remembers and get back to you. please email me at krystalline1717@yahoo.com. that is not my normal email address it is just the one I give out on public forums in case I get a lot of spam. if you email me there I will give you my real email address that I do check pretty much every day and we can talk more if you are comfortable with that. if not I will try to stay on top of any posts you put on here. I hope you are feeling better! I am so sorry that you are having to go through this too!!
    Krystal D 26 Replies
    • December 5, 2009
    • 07:50 AM
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  • I wish you well in your treatment and recovery. If you have not had a neurosurgeon consult on or about the tumor then I would recommend one. Additionally, some of the best neurosurgeons on located at Scott & White Hospital in Temple, Tx (sw.org) Dr. Vasilios Zerris is becoming a real time legend with good reason (my own personal experience).Good luck to you and yes, unfortunately, we all have to be our own healthcare advocate and ask those '20 questions' each time we encounter a doctor.
    Anonymous 42789 Replies
    • December 13, 2009
    • 08:21 AM
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  • One other thing I would mention (from previous post) is that if you do opt for a Scott & White consult, the Endocrinologist you would want to see is Dr. Veronica Piziak. She's great in her field (personal experience yet again). Good Luck.
    Anonymous 42789 Replies
    • December 13, 2009
    • 08:25 AM
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  • One other thing I would mention (from previous post) is that if you do opt for a Scott & White consult, the Endocrinologist you would want to see is Dr. Veronica Piziak. She's great in her field (personal experience yet again). Good Luck. Hey Krystal, I am posting because I need to talk with you about something that I found out recently to see if it relates to your experience!
    ohfaithful 68 Replies
    • December 15, 2009
    • 01:15 AM
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  • I was locked in a mental institute, labeled as bipolar, thrown onto the highest anti psycotic medine they had 500mg of zyprexa without starting off on a lose dose and now 2 years later i find out i have a brain tumor, hope i survive ;O
    Anonymous 42789 Replies Flag this Response
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