A few weeks ago, my newest general practitioner, at the advice of a wise person from Cedars Sinai, (more on my new hero soon), gave me a test that would measure cortisol after taking dexamethasone. Anyone reading my symptoms of the last eight years, someone would seek answers in the line of Cushing's disorders. Well the Dex test is supposed to see if my cortisol goes up or down after taking the drug. The next morning the test showed that my cortisol was suppressed so something was working properly. My GP however, didn't quite get that this was the point of the test, thought something was askew, and sent me to yet one more new endocrinologist.
Now I'm not a fan of many doctors as you can well imagine. It's been less than fun visiting endo after endo who have done more harm than not. I said specifically, do NOT send me to Nahkle, after the humiliation he sprayed me down with, and fortunately he isn't in our system at the new doc's practice. Instead I went to a younger doctor who seemed to have a far better education, and currently serves as dean of the endo department at a local medical school. I looked up his ratings from patients and I looked up his history as far as paying attention to new patients.
The first thing he did was remove any of my asthma and sinus medications that had steroids in them. That was good. The second thing he did was look at my history, although I believe he missed some major points I made. It did seem I was going to be given the 'Well, you're going through menopause so there's nothing I can do for you." He started saying that when I reminded, as gently as I could, that I've heard that exact sentence said to me from the time I was 22. He then realized I had PCOS examinations, and checked on my goiter. (Yeah, Love that word.)
He started asking questions that pointed back to the Cushing's diagnosis I'd been showing symptoms of for the last eight years, but then 'it became apparent since my Dex test was the one answer he had, he didn't feel that was the issue. He also asked about my adrenal history. Finally. This was the ONLY time I had ever been asked these questions in my entire medical history. I've had adrenal crisis issues for years, since childhood in fact, and no one since childhood has ever mentioned adrenal issues. Another interesting fact is my body seems to produce a lot of cholesterol related stones, (gallstones, kidney stones, even appearances of rocks near major joints).
I asked him point blank about Cushing's and was told point blank, "Your case is complex, yes, but I don't see Cushing's. I think we should take blood tests to see what else there is, but I think you're just getting older." This is when I deflated. Here was so much hope, and then, he quit on me. He spent a half an hour asking questions, sort of read my history, and decided, "Oh middle aged white woman must be on too much internet and Oprah" as I've faced so many times. There hasn't been a doctor who listened to me except for my newest GP in years, and I didn't think that there ever would be. But, there is a small glimmer of "well, maybe...."
Flash back to my hero mentioned above. I first saw Sharm McGraw on Mystery Diagnosis when she told my story through her history. The show ran years back and years back I tried to find her as she mentioned running a patient advocacy service. It became a very difficult task until recently. I saw her story repeated and thought I'd try one more time. This time I had luck. In fact, she and I have emailed, with her wisdom of offering what tests MAY help my doctor figure out something. She made the point of stating that this one test was never the whole answer. She didn't expect it would offer me any hope at all. BUT she did offer me the name of a doctor and a clinic just few hours away in California.
It turns out Cedars Sinai has a Women's Health Research Center. They also have an endo center that deals specifically with hormones only women battle. Surprising also, the center deals with metabolic issues faced by women. The waiting list to see the doctors there is almost two years. However if you are willing to call every few days and see if there are cancellations, there are chances of seeing someone sooner. And, it's been Sharm's job to help get information to people via conferences and seminars. At these events, doctors see women who have battles similar to mine.
Four months ago I went from 176 lbs to 205, and now I'm going down again. (Two weeks ago I went from 205 to 192). I just want to have ONE answer for Myasthenia Gravis, Ehlers-Danlos, Hashimoto's and Trigeminal Neuropathy, along with major depression. Autoimmune disease don't compound in most people, and yet for me there is a trend in that direction. I gain and lose weight for no apparent reason. My hair turns to straw, my skin bruises and no one seems to believe that any of this is related. I can't fathom so many illnesses of such an odd variety not related somehow. But, doctors aren't believing me. They don't seem to get that this isn't make believe. They'd rather try to kill me by not caring or worse, trying to placate me with "you're just getting older." Women need to be heard, and I mean really heard. We aren't all sitting around making up illnesses or spending our lives online hoping we have something Dr. House will discover.
On a final note this week, I did run into someone who has three of my four illnesses. In 1964, three doctors wrote a research paper on a young black man from Georgia who had Ehlers-Danlos, Myasthenia Gravis, and Thyroid disorders. The doctors have either passed on or retired, and I'm unable to reach any of them. They noted how odd it was to find all three in one person, and how much of this has affected the then 22 year old. I would very much like to find this person and see how his life has turned out 47 years later. He was written about in the year I was born. If anyone has heard of this person, please contact me via the blog. His life could change mine. And I hope some of yours as well.
Now I'm not a fan of many doctors as you can well imagine. It's been less than fun visiting endo after endo who have done more harm than not. I said specifically, do NOT send me to Nahkle, after the humiliation he sprayed me down with, and fortunately he isn't in our system at the new doc's practice. Instead I went to a younger doctor who seemed to have a far better education, and currently serves as dean of the endo department at a local medical school. I looked up his ratings from patients and I looked up his history as far as paying attention to new patients.
The first thing he did was remove any of my asthma and sinus medications that had steroids in them. That was good. The second thing he did was look at my history, although I believe he missed some major points I made. It did seem I was going to be given the 'Well, you're going through menopause so there's nothing I can do for you." He started saying that when I reminded, as gently as I could, that I've heard that exact sentence said to me from the time I was 22. He then realized I had PCOS examinations, and checked on my goiter. (Yeah, Love that word.)
He started asking questions that pointed back to the Cushing's diagnosis I'd been showing symptoms of for the last eight years, but then 'it became apparent since my Dex test was the one answer he had, he didn't feel that was the issue. He also asked about my adrenal history. Finally. This was the ONLY time I had ever been asked these questions in my entire medical history. I've had adrenal crisis issues for years, since childhood in fact, and no one since childhood has ever mentioned adrenal issues. Another interesting fact is my body seems to produce a lot of cholesterol related stones, (gallstones, kidney stones, even appearances of rocks near major joints).
I asked him point blank about Cushing's and was told point blank, "Your case is complex, yes, but I don't see Cushing's. I think we should take blood tests to see what else there is, but I think you're just getting older." This is when I deflated. Here was so much hope, and then, he quit on me. He spent a half an hour asking questions, sort of read my history, and decided, "Oh middle aged white woman must be on too much internet and Oprah" as I've faced so many times. There hasn't been a doctor who listened to me except for my newest GP in years, and I didn't think that there ever would be. But, there is a small glimmer of "well, maybe...."
Flash back to my hero mentioned above. I first saw Sharm McGraw on Mystery Diagnosis when she told my story through her history. The show ran years back and years back I tried to find her as she mentioned running a patient advocacy service. It became a very difficult task until recently. I saw her story repeated and thought I'd try one more time. This time I had luck. In fact, she and I have emailed, with her wisdom of offering what tests MAY help my doctor figure out something. She made the point of stating that this one test was never the whole answer. She didn't expect it would offer me any hope at all. BUT she did offer me the name of a doctor and a clinic just few hours away in California.
It turns out Cedars Sinai has a Women's Health Research Center. They also have an endo center that deals specifically with hormones only women battle. Surprising also, the center deals with metabolic issues faced by women. The waiting list to see the doctors there is almost two years. However if you are willing to call every few days and see if there are cancellations, there are chances of seeing someone sooner. And, it's been Sharm's job to help get information to people via conferences and seminars. At these events, doctors see women who have battles similar to mine.
Four months ago I went from 176 lbs to 205, and now I'm going down again. (Two weeks ago I went from 205 to 192). I just want to have ONE answer for Myasthenia Gravis, Ehlers-Danlos, Hashimoto's and Trigeminal Neuropathy, along with major depression. Autoimmune disease don't compound in most people, and yet for me there is a trend in that direction. I gain and lose weight for no apparent reason. My hair turns to straw, my skin bruises and no one seems to believe that any of this is related. I can't fathom so many illnesses of such an odd variety not related somehow. But, doctors aren't believing me. They don't seem to get that this isn't make believe. They'd rather try to kill me by not caring or worse, trying to placate me with "you're just getting older." Women need to be heard, and I mean really heard. We aren't all sitting around making up illnesses or spending our lives online hoping we have something Dr. House will discover.
On a final note this week, I did run into someone who has three of my four illnesses. In 1964, three doctors wrote a research paper on a young black man from Georgia who had Ehlers-Danlos, Myasthenia Gravis, and Thyroid disorders. The doctors have either passed on or retired, and I'm unable to reach any of them. They noted how odd it was to find all three in one person, and how much of this has affected the then 22 year old. I would very much like to find this person and see how his life has turned out 47 years later. He was written about in the year I was born. If anyone has heard of this person, please contact me via the blog. His life could change mine. And I hope some of yours as well.
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