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  1. 1 point
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    Friday April 12, 2019 8:30am – 4:30pm Zuckerman Research Center 417 E. 68th St. New York, NY Memorial Sloan Kettering Cancer Center This course is suited for medical professionals, patients, and caregivers to improve patient care and outcomes through evidence-based discussion of clinical practice guidelines and emerging therapies in order to assess and update current practices to promote earlier diagnosis and treatment of pituitary diseases. The multidisciplinary nature of the course will allow the dissemination of knowledge across the variety of practitioners caring for pituitary patients, as well as for patients and caregivers. After completion of this educational activity, participants will be up-to-date on the latest in ongoing care and clinical management of patients with pituitary conditions. The patient breakout sessions will provide pituitary patients the ability to review treatment options, learn about ongoing clinical trials, and discuss their comprehensive care with providers and other patients. Memorial Sloan Kettering Cancer Center is providing this course to pituitary patients and caregivers free of charge. To register to attend, please email cme@mskcc.org . (Please note: Registration is required in order to attend.) Medical Professionals who wish to attend must register online: mskcc.org/PituitaryCourse . View Course Flyer
  2. 1 point
    Presented by: James K. Liu, MD Professor of Neurosurgery Director of Skull Base and Pituitary Surgery Rutgers University, New Jersey Medical School RWJ Barnabas Health After registering you will receive a confirmation email with information about joining the webinar. Register here Date: January 9, 2019 Time: 3:00PM- 4:00 PM Pacific Standard Time, 6:00 PM - 7:00 PM Eastern Standard Time Learning Objectives: To understand the medical therapies for prolactinomas To understand the roles of surgery for prolactinomas To understand the roles of radiation for prolactinomas Presenter Bio: Dr. James K. Liu is the Director of Cerebrovascular, Skull Base and Pituitary Surgery at the Rutgers Neurological Institute of New Jersey, and Professor of Neurological Surgery at Rutgers University, New Jersey Medical School. He is board certified by the American Board of Neurological Surgery, and has a robust pituitary tumor practice at University Hospital and Saint Barnabas Medical Center. Dr. Liu graduated summa cum laude from UCLA with Phi Beta Kappa honors, and obtained his MD from New York Medical College with AOA honors. After completing a neurosurgery residency at the University of Utah in Salt Lake City, he was awarded the Dandy Clinical Fellowship by the Congress of Neurological Surgeons, and obtained advanced fellowship training in Skull Base, Cerebrovascular Surgery & Neuro-oncology at the Oregon Health & Science University in Portland. Dr. Liu is renowned for his comprehensive treatment of complex brain tumors and skull base lesions, including pituitary tumors, acoustic neuromas,meningiomas, craniopharyngiomas, chordomas, and jugular foramen tumors. His robust clinical practice encompasses both traditional open and minimally invasive endoscopic endonasal skull base approaches. He also specializes in microsurgery of cerebrovascular diseases including aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and carotid artery stenosis. He also has expertise in cerebrovascular bypass procedures for moya moya disease, carotid artery occlusion, vertebral artery occlusion, complex aneurysms and skull base tumors, as well as endoscopic-assisted microvascular decompression for trigeminal neuralgia and hemifacial spasm. As one of the most active researchers in his field, Dr. Liu has published extensively with over 250 peer-reviewed publications and 25 textbook chapters. He has taught many hands-on cadaver dissection courses in skull base surgery and has lectured extensively nationally and internationally throughout North America, Latin America, Europe, and Asia. Dr. Liu's research is focused on the development of innovative and novel skull base and endoscopic techniques, quantitative surgical neuroanatomy, microsurgical and microvascular anastomosis skills training, virtual surgical simulation, pituitary tumor biology, and clinical outcomes after skull base and cerebrovascular surgery. Dr. Liu is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, North American Skull Base Society, Pituitary Network Association, The Facial Pain (Trigeminal Neuralgia) Association, AANS/CNS Cerebrovascular Section, Tumor Section. He serves on the medical advisory board of the Acoustic Neuroma Association of New Jersey, and is the current Secretary-Treasurer of the International Meningioma Society.
  3. 1 point
    Presented by Mario Zuccarello, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery and Jonathan A. Forbes, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: December 3, 2018 Time: 3:00PM - 4:00PM Pacific Standard Time 6:00PM - 7:00PM Eastern Standard Time Learning Objectives: To understand the role of surgery in the treatment of pituitary tumors To understand the advantages and disadvantages of different surgical approaches in the treatment of pituitary tumors To understand the risks and benefits associated with different surgical strategies Presenter Bios: Mario Zuccarello, MD Neurosurgeon Mario Zuccarello, MD, is currently a Professor of Neurosurgery in the Department of Neurosurgery at the University of Cincinnati. He was the Frank H. Mayfield Chair for Neurological Surgery and Chairman of the Department of Neurosurgery from 2009-2017. Dr. Zuccarello is also a member of the University of Cincinnati Gardner Neuroscience Institute and the Greater Cincinnati/Northern Kentucky Stroke Team. Dr. Zuccarello is dedicated to clinical research in neurovascular disease and the development of new neurosurgical techniques for the treatment of stroke, cerebral hemorrhage, vasospasm, carotid artery disease, and moyamoya disease. While Cincinnati has become widely known for its leadership in stroke research, treatment, and the development of clot-busting drugs, Dr. Zuccarello has led a quiet revolution in the prevention and treatment of brain hemorrhages, which rank among the most hazardous conditions of the brain. Dr. Zuccarello graduated summa cum laude from the Gymnasium in Catania, Italy, in 1970. He received his medical degree from the University of Padova, Italy, in 1976, and completed his residency in neurosurgery from Padova, with summa cum laude honors, in 1980. He subsequently performed research fellowships at the University of Iowa and the University of Virginia Medical Center, Charlottesville, and a clinical fellowship at the University of Cincinnati. He was inducted into Alpha Omega Alpha, the national medical honor society in 2001 and has been named to the Best Doctors in America since 2005. In 2013, he received recognition by members of the Vasospasm consortium for his dedication and outstanding accomplishments in the field of experimental and clinical research on subarachnoid hemorrhage. Jonathan A. Forbes, MD Neurosurgeon Dr. Forbes is a fellowship-trained neurosurgeon with expertise and interest in open and minimally-invasive approaches for treatment of pathology of the cranial base. He has a long and distinguished history of academic recognition, commitment to excellence, and service to our country. As an undergraduate at Grove City College, he was a recipient of the Trustee Scholarship and was named Sportsman of the Year after his senior season of varsity football. Following the events of 9/11, he enrolled in the Health Professions Scholarship Program with the United States Air Force. In medical school at the University of Pittsburgh, he was a recipient of the David Glasser Honors’ Award for academic performance. During neurosurgical residency at Vanderbilt University, he received numerous national accolades—including the AANS Synthes Craniofacial Award for Research in Neurotrauma as well as the AANS Top Gun Award. His score on the American Board of Neurological Surgery (ABNS) written board examination during his fourth year of residency was recognized in the top 3% nationwide. After completing his chief year of neurosurgical residency at Vanderbilt in 2013, Dr. Forbes went on to fulfill a 4-year commitment with the U.S. Air Force that included a 6-month deployment to Bagram Air Force Base in Afghanistan. Humanitarian care he provided at the Craig Joint Theater Hospital in Bagram has been featured in numerous neurosurgical journals—including Journal of Neurosurgery, World Neurosurgery and Neurosurgical Focus—and recognized on a national level by the USAF as part of the “Through Airmen’s Eyes” series. After honorable discharge from the military, he completed a minimally-invasive skull base fellowship at Weill Cornell Medical Center in New York City under the guidance of Dr. Theodore Schwartz prior to joining the UC Department of Neurosurgery. To date, Dr. Forbes has contributed to over 40 peer-reviewed publications.
  4. 1 point
    HI EVERYONE I AM NEW HERE. BUT I AM NOT NEW TO CUSHING,S. BEEN SICK FOR MANY MANY YEASRS. I CAN NOT GET HELP HERE WHER I LIVE IN SMALL TOWN NOVA SCOTIA CANADA. THANKS FOR BEING HERE FOR ME.
  5. 1 point
    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/
  6. 1 point
    Read all the blog posts here, on the right side. It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.
  7. 1 point
    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2017/03/08/time-to-sign-up-for-the-cushings-awareness-challenge-2017/ The original page is getting very slow loading, so I've moved my own posts to this newer blog. As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc. If you have photos, and you give me permission, I'll add them to the Pinterest page for Cushing's Help. The Cushing’s Awareness Challenge is almost upon us again! Do you blog? Want to get started? Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge. All you have to do is blog about something Cushing’s related for the 30 days of April. There will also be a logo for your blog to show you’ve participated. Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing's Help Facebook Groups, on the message boards or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/) The more people who participate, the more the word will get out about Cushing’s. Suggested topics – or add your own! In what ways have Cushing’s made you a better person? What have you learned about the medical community since you have become sick? If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients? What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that. I have Cushing’s Disease….(personal synopsis) How I found out I have Cushing’s What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) My challenges with Cushing’s Overcoming challenges with Cushing’s (could include any challenges) If I could speak to an endocrinologist organization, I would tell them…. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing’s? Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured. What will happen if I’m not cured? I write about my health because… 10 Things I Couldn’t Live Without. My Dream Day. What I learned the hard way Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer) Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual! 5 Challenges & 5 Small Victories. The First Time I… Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more. How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially? Why do you think Cushing’s may not be as rare as doctors believe? What is your theory about what causes Cushing’s? How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals? What new goals did Cushing’s bring to you? How do you cope? What do you do to improve your quality of life as you fight Cushing’s? How Cushing’s affects children and their families Your thoughts…?
  8. 1 point
    My doctors say it can take a lot of testing before a diagnosis. Midnight saliva cortisols mostly. Beware...not all labs support this and it may take some effort to get it accomplished.
  9. 1 point
    In Europe, nearly 20 percent of patients with Cushing’s syndrome receive some sort of medication for the disease before undergoing surgery, a new study shows. Six months after surgery, these patients had remission and mortality rates similar to those who received surgery as a first-line treatment, despite having worse disease manifestations when the study began. However, preoperative medication may limit doctors’ ability to determine the immediate success of surgery, researchers said. Read more at https://cushieblog.com/2018/02/26/benefits-of-medication-before-surgery-for-cushings-syndrome-still-unclear/
  10. 1 point
    Benefits of Medication Before Surgery for Cushing’s Syndrome Still Unclear https://t.co/NPBQ9HJP20
  11. 1 point
    Usually, you have to do a LOT of 24-hour UFCs to get diagnosed. One just doesn't get it. When I was being diagnosed, I did several weeks of daily UFCS. Are you seeing a good endocrinologist who is knowledgeable about Cushing's? Please keep us posted.
  12. 1 point
    I just wanted to say hello. You are in such good hands at the NIH. I too, had surgery there and they saved my life. I hope things are going well for you.
  13. 1 point
    Laura, Shaw is absolutely correct. Usually, to diagnose Cushing's, you need many tests, some at specific times of the day and some ALL day. If you can, get to an endocrinologist who is very familiar with Cushing's and Cushing's testing. Best of luck to you and please keep us posted.
  14. 1 point
    If you join these boards - it's free - and post a bit, you'll be able to do searches and get lots more features that you have as a guest. Best of luck to you!
  15. 1 point
    Hi, Amy - I had most of the same symptoms as you but I was always "chunky". I thought I was pregnant when I noticed my first symptom - loss of my periods. Even though I was faithfully working out most days at my gym and was on track with my foods with Weight Watchers, I gained weight. And tired/exhaustion/fatigue was with me daily. It took about 5 years for a diagnosis. My whole bio is here (although it needs an update): https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/ Why not join these boards so you can read everything we've written about the symptoms you're experiencing now? Best of luck to you!
  16. 1 point
    Hi, Sorry I'm late responding. I have only recently returned to the boards. I have a couple of things to say about fat pads over the collar bones. First is to make sure they are fat pads. You say they are tender, to make sure its not swollen glands, hunch your shoulders up to your ears and feel inside your collarbone for any hard lumps. If this test shows no hard lumps then it most likely is fat pads. One of the most common reasons for fat pads over the collar bones is stress. Cortisol is our stress hormone. So it certainly wont hurt to have cortisol levels checked. 24 hr Urine, with Midnight saliva test followed by an early morning Blood cortisol and ACTH test should give a good picture of if it is cushing or something else. Just know that one test in the normal range does not rule out cushings, just as one abnormal result doesnt confirm cushings. It takes a range of tests over several months to get a diagnosis. Because the treatment is pretty serious, your medical team will want to make sure what they are doing is right for you. I know it can be frustrating lol it was for me. But I have learnt that my Medical team does have my best interests at heart, even if they did consider that I was somehow making myself sick !! I proved them wrong For me.... If you think there is something not right, go with your gut and get it checked out. You know your body and every body is different :). So one scenario is not going to be exactly alike Good luck
  17. 1 point
    I have not been on these boards in a few years. My status is stable and now on daily Cortef replacement due to stressful divorce, hypothyroid, hypopituitary....God Bless Dr F. who keeps me living my best quality of life. I never thought every day would be a new science experiment....but.....at least I'm 18 years post adrenalectomy / coma and 10 years post thyroidectomy and still enjoying life and family! Thank you Mary for these boards which back in 2000 were the only source of support and education there was for a patient like me. I joined them in 2000 and again in 2004. I will always be grateful for the sense of normalcy and belonging I found on this web site. I work from home now and have a great life! To all of you just starting the journey......DONT GIVE UP....LIFE IS WORTH LIVING AND YOU MATTER...With the right Drs on your team and these boards you can live your best life. Educate yourself and be proactive. Be strong and please don't be afraid to ask questions or ask for help......Blessings Lynn in Oregon
  18. 1 point
    RT @SenSanders: People do not deserve to die because they cannot afford health care. I cannot make it any clearer than that. Health care is…
  19. 1 point
    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: http://cushie-blogger.blogspot.com/2016/03/fifth-annual-cushings-awareness.html That page is getting very slow loading, so I've moved my own posts to a new blog at https://cushieblogger.com As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and here on Facebook at Cushings Help Organization, Inc The Cushing’s Awareness Challenge is almost upon us again! Do you blog? Want to get started? Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Sixth Annual Cushing’s Awareness Blogging Challenge. All you have to do is blog about something Cushing’s related for the 30 days of April. There will also be a logo for your blog to show you’ve participated. Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Facebook Groups, on the message boards or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/ ) The more people who participate, the more the word will get out about Cushing’s. Suggested topics – or add your own! In what ways have Cushing’s made you a better person? What have you learned about the medical community since you have become sick? If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients? What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that. I have Cushing’s Disease….(personal synopsis) How I found out I have Cushing’s What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) My challenges with Cushing’s Overcoming challenges with Cushing’s (could include any challenges) If I could speak to an endocrinologist organization, I would tell them…. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing’s? Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured. What will happen if I’m not cured? I write about my health because… 10 Things I Couldn’t Live Without. My Dream Day. What I learned the hard way Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer) Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual! 5 Challenges & 5 Small Victories. The First Time I… Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more. How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially? Why do you think Cushing’s may not be as rare as doctors believe? What is your theory about what causes Cushing’s? How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals? What new goals did Cushing’s bring to you? How do you cope? What do you do to improve your quality of life as you fight Cushing’s? How Cushing’s affects children and their families Your thoughts…?
  20. 1 point
    October 1, 2012 at 6:30 PM eastern, Dr. Amir Hamrahian will answer our questions about Cushing's, pituitary or adrenal issues and Korlym (mifepristone) in BlogTalkRadio at http://www.blogtalkr...s-our-questions You may listen live at the link above. The episode will be added to the Cushing's Help podcast after the show is over. Listen to the podcasts by searching for Cushings in the iTunes podcast area or click here: http://itunes.apple....ats/id350591438 Dr. Hamrahian has had patients on Korlym for about 4 years. Please submit your questions below or email them to CushingsHelp@gmail.com before Sunday, September 30. From Dr. Hamrahian's bio at http://my.clevelandc...x?doctorid=3676 Amir Hamrahian, M.D. (216) 444-6568 http://my.clevelandc...5&DoctorID=3676 Appointed: 2000 Request an Appointment Research & Publications † ( † Disclaimer: This search is powered by PubMed, a service of the U.S. National Library of Medicine. PubMed is a third-party website with no affiliation with Cleveland Clinic.) Biographical Sketch Amir H. Hamrahian, MD, is a Staff member in the Department of Endocrinology, Diabetes and Metabolism at Cleveland Clinic's main campus, having accepted that appointment in 2005. Prior to that appointment, he was also a clinical associate there for nearly five years. His clinical interests include pituitary and adrenal disorders. Dr. Hamrahian received his medical degree from Hacettepe University in Ankara, Turkey, and upon graduation was a general practitioner in the provinces of Hamadan and Tehran, Iran. He completed an internal medicine residency at the University of North Dakota, Fargo, and an endocrinology fellowship at Case Western Reserve University and University Hospitals, Cleveland. In 2003, he received the Teacher of the Year award from Cleveland Clinic's Department of Endocrinology, Diabetes and Metabolism. Dr. Hamrahian speaks three languages -- English, Turkish and Farsi -- and is board-certified in internal medicine as well as endocrinology, diabetes and metabolism. He is a member of the Endocrine Society, Pituitary Society and the American Association of Clinical Endocrinologists. Education & Fellowships Fellowship - University Hospitals of Cleveland Endocrinology Cleveland, OH USA 2000 Residency - University of North Dakota Hospital Internal Medicine Fargo, ND USA 1997 Medical School - Hacettepe University School of Medicine Ankara Turkey 1991 Certifications Internal Medicine Internal Medicine- Endocrinology, Diabetes & Metabolism Specialty Interests Cushing syndrome, acromegaly, pheochromocytoma, prolactinoma, primary aldosteronism, pituitary disorders, adrenal tumor, adrenocortical carcinoma, MEN syndromes, adrenal disorders Awards & Honors Best Doctors in America, 2007-2008 Memberships Pituitary Society Endocrine Society American Association of Clinical Endocrinologists American Medical Association Treatment & Services Radioactive Iodine Treatment Thyroid Aspiration Thyroid Ultrasound Specialty in Diseases and Conditions Acromegaly Addison’s Disease Adrenal disorders Adrenal insufficiency Adrenal Insufficiency and Addison’s Disease Adrenal Tumors Adrenocortical Carcinoma Adrenoleukodystrophy (ALD) Amenorrhea Androgen Deficiency (Low Testosterone) Androgen Excess Calcium Disorders Carcinoid Syndrome Conn's Syndrome Cushing's Syndrome Empty sella Erectile Dysfunction Familial Multiple Endocrine Neoplasia Fasting hypoglycemia Flushing Syndromes Galactorrhea Goiter Growth hormone deficiency Growth hormone excess Gynecomastia Hirsutism Hyperaldosteronism Hyperandrogenism Hyperprolactinemia Hypertension - High Blood Pressure Hyperthyroidism Hypocalcemia Hypoglycemia Hypogonadism Hypoparathyroidism Hypophysitis Hypopituitarism Hypothyroidism Mastocytosis Menopause, Male Menstrual Disorders Paget's Disease Panhypopituitarism Parathyroid Cancer Parathyroid Disease and Calcium Disorders Pheochromocytoma Pituitary Cysts Pituitary Disorders Pituitary stalk lesions Pituitary Tumors Premenstrual Syndrome (PMS) Primary Hyperaldosteronism Primary Hyperparathyroidism Prolactin Excess States Prolactinoma Thyroid and pregnancy Thyroid Cancer Thyroid Disease Thyroid Nodule
  21. 1 point
    Thanks to Robin (staticnrg) for making a wonderful co-host, as always Listen to tonight's interview with Dr Hamrahian at http://www.blogtalkradio.com/cushingshelp/2012/10/01/dr-amir-hamrahian-answers-our-questions or soon on iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438 Dr. Hamrahian has agreed to return at some point in the future to answer more questions for us
  22. 1 point
    I can't imagine that anyone with Cushing's would want to chance passing this gene along.
  23. 1 point
    I lost copious amounts of hair while on Korlym, is this a known side effect?
  24. 1 point
    Looking forward to it Mary. Thanks so much for arranging it.
  25. 1 point
    I am looking for information about doctors wh specialize in Cushing's syndrome in Portland, OR or somewhere around Oregon or Washington. I am 99.99% sure I have Cyclical Cushing's and have had it for the last 16 years. I currently have to endocrinologists at OHSU even though they are great physicians they they are hesitant on diagnosing me with it they want me to have Gastric Bypass, they keep saying Cyclical Cushing's is too rare for me to have. I have had 3 episodes/cycles since I was 16 ... I match pretty much every and I mean every symptom of Cushing's I even have had two high 24 hour Urine Cortisol's, but they did not feel that it is enough to give me the diagnosis. I took in before and after pictures to show the progression of this over the years, I am currently on 700 + units of insulin a day(and my sugar levels still stay between 350-400 daily), 2550mg a day of metfomin, I have developed hypertension, low potassium, an extremely distended stomach (which is really hard on top) my legs and arms are thin, my face is ver, very round and gets red, I have no periods, My muscles are killing me along with my joints and the hump on the back of my neck between my shoulders is huge and is killing me, My ribs are hurting, I have insomnia, panic attacks almost daily, large pink/purple stretch marks, severe edema, severe daytime fatigue, forgetfulness, losing some cognitive skills, a continuous sinus headache, The pain is becoming unbearable in my joints, acne, losing hair, lots of facial hair on cheeks and chin, I am urinating non-stop, my muscles are extremely weak and it is becoming dfficult to walk because my ankles, knees and hips hurt so bad. I am having a hard time walking especially when it's on an incline. I keep stumbling and losing balance(this is recent). Each episode is worse then the one prior... This is my 3rd bout with this and it is awful... I am only 32 y/o and my doctors won't listen... my Endo's at OHSU keep saying eat less and will not refer me to another endo in the office who specializes in this. I have been emailing them, but now they won't even reply, they keep telling me to excersize more, but I can't because it is so painful and I am so tired. Can someone please tell me of other doctors they have seen that heloped them get a final diagnosis? I did have dexamethsone, and ACTH don, but they were normal... I really want an MRI, ultrsound and CAT scan done. I have great insurance, but I feel like I am getting 3rd world care and being passed of as a crazy person. Thank you for any help!
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