MaryO
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Status Updates posted by MaryO
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Angie is from Alamo. Her Endo tested her and within 6 months they were positive for Cushing's. She had surgery on her pituitary gland April 11, 2017. The endo at the hospital said that the surgery was unsuccessful.
Read more at https://cushingsbios.com/2018/04/30/angie-angie-pituitary-bio/
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Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members
Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.
Read more at https://cushieblogger.com/2019/04/02/archived-interview-symptoms-and-diagnosis-cushings-message-board-members/
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As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing's. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.
Read more at https://cushieblogger.com/2019/04/12/day-12-cushings-awareness-challenge-2019/
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As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing's. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.
Read more at https://cushieblogger.com/2018/04/11/day-11-cushings-awareness-challenge-2018/
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Brian is from Pendleton, IN He had thyroid surgery in October 2015 and a second in December 2015. He also has had pituitary surgery. In July 2018 blood tests confirmed his Cushing's is back.
Read his bio at https://cushingsbios.com/2018/12/15/brian-r-mens-bio/
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Charlie is not yet diagnosed with Cushing’s but has many symptoms. He writes, in part, “I understand that Cushing’s Disease is a very difficult disease to diagnose. However, it seems as though we have had to guide doctors through this process over the past year. If I sound bitter and frustrated, it is because I am! I have not been able to work over the past year. Tasks that used to take me several hours to complete now take two days. I can no longer walk the dog. I do not sleep well at night..”
Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/10/interview-with-charlie-creativeogre
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Children suspected of having GHD – which cause growth to slow down or stop and other serious physical problems—currently require a test involving fasting for up to 12 hours.
Read more at https://cushieblog.com/2018/04/10/gene-test-for-growth-hormone-deficiency-developed/
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Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day.
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Comment added to Diana B (Diana Brown), Undiagnosed Bio
My symptoms are almost identical to yours, but I have yet to have any cortisol testing done (I have doctors appointments coming up that I will ask about having the tests done).
Read more at https://cushingsbios.com/2014/04/25/diana-b-diana-brown-undiagnosed-bio/comment-page-1/#comment-25835
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Cushie Crusader, that’s me…and many others. I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…
Read more at https://cushieblogger.com/2018/04/18/day-18-cushings-awareness-challenge-2018/
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Cushing’s disease patients who exhibit nodules or masses in their lungs should be thoroughly investigated to exclude fungal infection with Cryptococcus neoformans, a study from China suggests.
While rare, the infection can be life-threatening, showing a particularly worse prognosis in patients with fluid infiltration in their lungs or with low white blood cell counts in their blood.
Read more at https://cushieblog.com/2018/06/16/cushings-patients-at-risk-of-life-threatening-pulmonary-fungal-infection/
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Cushing’s Myths and Facts: It is MY fault that I got Cushing’s…
Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth.
Read more at https://cushieblogger.com/2019/04/13/cushings-myths-and-facts-it-is-my-fault-that-i-got-cushings/
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Cushing’s syndrome is a condition you probably have never heard of, but for those who have it, the symptoms can be quite scary. Worse still, getting it diagnosed can take a while. Cushing’s syndrome occurs when the tissues of the body are exposed to high levels of cortisol for an extended amount of time. Cortisol is the hormone the body produces to help you in times of stress. It is good to have cortisol at normal levels, but when those levels get too high it causes health problems. Although cortisol is related to stress, there is no evidence that Cushing’s syndrome is directly or indirectly caused by stress.
Read more at https://cushieblog.com/2017/06/24/cushings-syndrome-a-tale-of-frequent-misdiagnosis/
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Cyndi is from Bradenton FL USA. She is In the process of discovery - all symptoms check marked. CT Scan completed 2 days ago - waiting with anxiety for results of blood work and scans.
Read more at https://cushingsbios.com/2018/03/03/cyndi-k-what-now-undiagnosed-bio/
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Danielle had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep.
Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back.
Read more at https://cushingsbios.com/2018/07/28/danielle-g-pituitary-bio/
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Day 3: Cushing’s Awareness Challenge 2019
If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
Read more at https://cushieblogger.com/2019/04/03/day-3-cushings-awareness-challenge-2019/
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Detailed imaging analysis of patients with Cushing’s disease (CD) and other disorders caused by pituitary adenomas (tumors that arise from the pituitary, a small gland in the brain) provides correlation with clinical characteristics and treatment response...
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Diagnosing Cushing’s syndrome can take 24 hours of complicated and repeated analysis of blood and urine, brain imaging, and tissue samples from sinuses. But that may soon be in the past: National Institutes of Health (NIH) researchers have found that measuring cortisol levels in hair samples can do the same job faster.
Read more at https://cushieblog.com/2017/04/01/a-faster-way-to-diagnose-cushings-syndrome/
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Diagnosis is based on a review of the patient's medical history, physical examination and laboratory tests. Often x-ray exams of the adrenal or pituitary glands are useful for locating tumors. These tests help to determine if excess levels of cortisol are present and why.
No single lab test is perfect, and usually, several are needed. The three most common tests used to diagnose Cushing's syndrome are the 24-hour urinary free cortisol test, the measurement of midnight plasma cortisol or late-night salivary cortisol, and the low-dose dexamethasone suppression test (LDDST). Another test, the dexamethasone-corticotropin-releasing hormone (dexamethasone-CRH) test, may be needed to distinguish Cushing's syndrome from other causes of excess cortisol.
Read more at http://www.cushings-info.com/index.php?title=Diagnostic_Testing
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Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s.
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Doctors often prescribe somatostatin analogs to manage the hormonal imbalance that characterizes Cushing’s syndrome. However, in rare situations these medicines have paradoxically made patients worse than better.
Read more at https://cushieblog.com/2017/12/30/common-cushings-treatment-somatostatin-analogs-may-sometimes-worsen-disease-course/
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Donna Sellers, President, John’s Foundation for Cushing’s Awareness, mother of a Cushing’s patient.
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Dr. Dori Middleman is a Psychophamacologist, Certified Gestalt Psychotherapist and Cushing’s Patient.
She has had both pituitary surgery and two gamma knife radiosurgeries.
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Dr. John Lee was a doctor who wrote extensively about progesterone therapy for women in menopause. This is one of his books on amazon: https://amzn.to/2JJ1JWw
Here’s a lecture on the HPA Axis...
Read more in the comments area of https://cushingsbios.com/2018/04/10/rachelle-l-rachelle-mother-in-law-of-pituitary-patient/
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Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation
She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.
Read more at https://cushieblogger.com/2018/04/03/myths-and-facts-about-cushings/
