Guest Carrie Posted March 9, 2002 Report Share Posted March 9, 2002 On the Cyclical board Shauna had suggested some great reading on the diagnosing of Cushing's. ?I read this article (or should I say novel ..hehe ?a few times ....wow ..excellent article!! I just wanted to post this one part here because when I read it ?....... ?it gave me hope that there really ARE doctors out there that aren't all 'textbook types'. the article: http://edrv.endojournals.org/cgi....INDEX=0 This is the conclusion following a very detailed article: It is clear that many approaches are used in the diagnosis and differential diagnosis of Cushing?s syndrome, with some being more valid than others. Ideally, the minimum number of investigations should be employed that allow accurate diagnosis and further management, and if at all possible these should be noninvasive. Since no single test is perfect, combinations of tests are employed to build up an overall picture, as even invasive investigations such as BIPSS fail to yield 100% diagnostic accuracy. Since Cushing?s syndrome has a high morbidity and mortality, and the accuracy of diagnosis is paramount, we would argue that more, rather than fewer, tests should be employed in any given patient, as they may not fit the statistical sensitivities and specificities detailed above. Moreover, we regard the investigation as urgent, and to ensure complete diagnostic rigor we routinely admit patients to our acute investigation ward for their initial and subsequent diagnostic work-up. We believe that such an approach, although more expensive in the short term, stands a greater chance of success in each individual patient. NOW IF WE COULD JUST GET ALL THE DOCTORS TO READ THIS!! ? ?~carrie Quote Link to comment Share on other sites More sharing options...
Over 2000 Posts Kristy Posted March 9, 2002 Over 2000 Posts Report Share Posted March 9, 2002 That is why, Carrie, we are working so you, the patient, can easily pull this information together. This way, you are impowered to assemble the data in a way to introduce it to your doctor so he/she can be enlightened...so to speak. In plain terms...print out....highlight areas of interest in yellow....make a list of questions....send to doctor in letter format and attach journal articles....teehee. Challenge your doctors....you need to become the expert. BUT...keep in mind...as I have learned....that my doctor...and there are others like my doctor....are sharp...and have already thought way outside the curve....and I am actually peddeling to catch up to him and his knowledge... cause he knows more in his 30 years of practice than my 18 months of being a patient..... Not all Cushing's patients fit in the neat tidy box.... and that is exactly what the paragraph of your article refers to. Each patient is unique and must be fully investigated. Quote Link to comment Share on other sites More sharing options...
Guest shansalot Posted March 9, 2002 Report Share Posted March 9, 2002 Wow i want to send every Dr that Peice of Knowledg :0 Its so unfortunite that if you dont fit in that non sensitive statistical box the detail to our illness is so prolonged that by the time we meat the statistical diagnosis we are battling way much more. then matters are even more confusing. Good looking out ladies :0 Quote Link to comment Share on other sites More sharing options...
Over 2000 Posts Shauna Posted March 9, 2002 Author Over 2000 Posts Report Share Posted March 9, 2002 I just like having credit for the article - lol. When you read it, it looks like I wrote it (wish I had!). It just proves that none of us fits exactly what the doctors want, nor will we all ever. A good doctor thinks outside the box and doesn't stop where the lab results do. Quote Link to comment Share on other sites More sharing options...
Guest Pattie Posted March 9, 2002 Report Share Posted March 9, 2002 Also, remember, that you can't burn your bridges. As the saying goes, what goes around comes around. If we alienate the people, that we need to help us, then we are no better off. We will be labeled as "neurotic". As this illness takes it's sweet time to accumulate, we too must be "patient' and pray for answers. The doctors work with the "black and white" areas of illnesses too much and maybe they should look at the "grey areas". Unfortunately, this is not always the case. We need to be vigilante but also understand the importance of the medical profession in dealing with rare disorders. ??? Quote Link to comment Share on other sites More sharing options...
Over 2000 Posts Kristy Posted March 9, 2002 Over 2000 Posts Report Share Posted March 9, 2002 That's a good point, Pattie. One of the doctor's that I was consulting with...I'll call him Dr. Researcher... sent me a letter and his letter, he felt like too many cooks spoil the... I wrote him back and told him that I didn't feel that way, but because my case was hard to diagnose, I needed the best and brightest minds I could find to contribute to my care and that I valued his contributions and his role will be..... His role hasn't been much in play in my case here lately, but I have a feeling it will be important. Another good point, Pattie, about calling attention to Cushings being a rare disorder. Most doctors will never see a Cushing's patient their entire lifetime...or if they do or have, they didn't realize it....even if it was right in front of them. Quote Link to comment Share on other sites More sharing options...
Guest Carrie Posted March 9, 2002 Report Share Posted March 9, 2002 I guess this is where my biggest confusion is. ?I have a nursing degree and I DO do a lot of my own research (me still being in the 'diagnosing' stages), but I am soooooo very cautious to let these Dr's know that. ?I had one Endo tell me that "you know, it is very common for a person to be so caught up in thinking they have a disease, that they actually get all the physical symptoms" ?..and then proceeded to ask me if I needed to seek mental health. ?I understand that this happens in medical students at times, but myself ?.... ?I was never sick in my life ....something started happening to my body ?....THEN I started to research. I have had patience. ?A whole year and a half worths (so far). I only know a tiny bit more now than I did when I first got sick. ?Last week when I seen Dr Young at Mayo, I broke down and cried. ?I did everything in my power not to do that, but I had this totally helpless feeling deep down inside of me that he was/is my last hope. ?He was very thoughtful and concerned, but never gave me any false hope. That is his profession, and that is good. ? All I can do now is wait ......... ?tests will be back around the 13th. ?I just need to quit thinking "where next" right? ? This article really did give me some hope tho ?.... ?it really did. ~carrie Quote Link to comment Share on other sites More sharing options...
Over 2000 Posts Kristy Posted March 10, 2002 Over 2000 Posts Report Share Posted March 10, 2002 A really good collection of articles is in the new Pituitary Patient's Resource guide. Carrie, you have a good doctor. Sometimes, in early Cushings, the diagnosis part is tough. Alot of the studies that were published that differentiated Cushing from normal people, the folks that had Cushings had FLORID Cushings. See, my gynoc had acromegly when he was an intern and he spent alot of time at the NIH in the 70s doing some protocol testing for acromegly. When I told him that I was being evaluated for Cushings, he said...Oh no...I've seen Cushings...you don't look like those folks I saw at the NIH... but here I am, and I have Cushings, it's just that now with me, do I have pituitary or ectopic? Thank goodness I have a doctor that is patient and allows the dimension of time to make things more clear. Early on, I had several other endos that blew me off (or at least I felt like they did). One just told me that I was depressed and needed prozac. This particular one spent 45 minutes of my appointment telling me all of the reasons why I needed prozac. I told him that he needed to rule out medical conditions before prescribing psychiatric drugs. Oh I know all about the med student sickness syndrome...just because you are a nurse doesn't mean you can't get sick. I don't think there is anything wrong with seeking out mental health either, as I did consult with a psychiatrist who also is a neurologist who did spend some time explaining to me the difference between clinical depression and sadness caused by being overwhelmed with pituitary disease (there is an excellent article in the pituitary resource guide that addresses this by the way). Besides, if you have a mental health expert on your side....this can be advantageous no? If the tests are not forthcoming right away, your doctor should work with you to try to find out the answers. Diagnosis in early Cushings can be elusive at first. Dr. F. also has a wonderful article in the pituitary resource guide about differentation between Cushings and Pseudo-Cushings...he states "The distinction between Cushing's syndrome and pseudo-Cushing's states is often difficult, leading to frustration for both patient and physician. To prevent this frustration, working closely with a good endocrinologist who sees many patients with Cushing's syndorme is needed. Patience is also needed. With time, most patients will "declare themselves" and develop a clearer picture consistent with either Cushing's syndrome or a pseudo-Cushing's state" I promise my doc must be cut out of the same mold 'cause I can't count how many times he has asked me if I was frustrated yet....or how many times he has said that in time things will be more clearer.... Maybe your doc at Mayo is out of the same mold too? It's o.k. to be really frustrated and worried. ((((Carrie)))) Quote Link to comment Share on other sites More sharing options...
Guest Carrie Posted March 10, 2002 Report Share Posted March 10, 2002 thanks Kristy ... everyone's posts are so helpful to me. I have never really been a person to open up to anyone, and sometimes I feel funny about doing so on this board. I've always been the care giver of the family, and I know that it's really hard on them to see me going thru all this. About a psychiatrist ...yes, I have thought about going to see one. I can feel myself slipping away sometimes due to the worry, the wonder and the pain. Kristy, you're right, it does make sense to have a mental health expert on your side. Thanks again for this wonderful support site. I've never seen more caring people ....... stay warm ... ~carrie Quote Link to comment Share on other sites More sharing options...
Over 2000 Posts Shauna Posted March 10, 2002 Author Over 2000 Posts Report Share Posted March 10, 2002 Carrie, When I first discovered Cushing's, I went to the doc's office with a thick folder of information. I told the intake nurse I suspected I had Cushing's. She patted my hand and said, "Honey, when we were in nursing school, we thought we had every disease we read about, too." I was just shocked. I mean, it wasn't like I pulled a disease out of a hat and decided, "Hey, I like this one. I'll take the one with central obesity, no menstrual cycle, facial hair and muscle wasting. That sounds good!" I tried explaining to her that I actually had a bunch of the symptoms, but she assured me that anyone could have those (really? prove it). By the time the doctor came into the room, I was scared to even mention it. I felt like a fool. The moral of my story is this: I was right. And my fear and humiliation delayed my treatment for two years. Like Kristy says, maybe that just gave me time to become more textbook. But I sure would love to have those years back or at least know I was working towards a diagnosis. I do think you have a good doctor, but sometimes things just don't mesh. Don't be afraid to keep looking if you're not comfortable or don't feel like the answers you're getting are complete. Good luck to you Quote Link to comment Share on other sites More sharing options...
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