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Everything posted by sowens

  1. The article is informative. I didn't get the part where AI was like congestive heart failure, other than we both share the same type of quality of life. I didn't read that it was identical to heart disease. Maybe I missed something. I have chronic AI that is not easily controlled without very large doses of steroids, which cause other problems. Good and bad days...good and bad.
  2. Many people with Cushing's end up having to become a doctor, lab tech, medical researcher and lawyer to get a cure. It is a fact. Most people with Cushing's could swear to that fact. We accept it and find ways around road blocks to get to a point where someone will help us. This story is about a girl, aged 18, who out smarted her doctors to find herself a diagnosis. While it isn't about, Cushing's, it is about a problem many face within the realm of modern medicine... Read More...
  3. I was down to 25 for a month and half. Was in AI the whole time I think my doctor is telling me. She made me go back up to 30. I stress dose not to often. Something isn't right with my meds and whatever happened in my head isn't fixed either.
  4. I never had issues before high cortisol. Then came the really high levels and the "mental stuff". No one fixed it, no one fixed me and now I think it is to late to fix. 4 months should have been long enough if it was going away after the bla. They want to give me drugs to hide it, but no one wants to fix it. Same crap different day.
  5. The guy likes deleting comments on his youtube hehe
  6. To bad the video is wrong on how to diagnose Cushing's. To simplistic and relies on gold standards that are not right.We all know that dex does not work on a lot of people nor does urine always work. In the video, 24hr urines are gold standards of testing. It is nice to see Cushing's being covered. It is just frustrating to see the same diagnostic process being used when we know it doesn't always work. Nice find though =]
  7. The pitfalls of modern medicine and lab results? by Steven Owens on Jan.18, 2009 I see the question all the time, what are the normal reference ranges for XYZ lab tests. The easy answer is it depends on the lab you are using. So, how does a lab determine what is "normal". You probably would have to ask each lab because I am sure there is a method to the madness. A problem, at least maybe for doctors, is that health care consumers are becoming educated on their own health. Michael Kleerekoper, MD, MACE describes on this site that: It is amazing, having looked through my own health care records, of the number of times doctors will brush off abnormal test results. For years, when lab work was done we just assumed it was always normal. Nowadays, we never assume and we ask or more importantly we get a copy of all lab work, medical imaging and other medical documentation. We never assume anything is normal. Read the entire article here
  8. Raff and Findling are making major headway with Cushing's. My endo most go and listen to them speak. I know she has been talking about them a lot the past few months. Raff signed off on my IPSS testing. My endo likes Findling because he believes totally in Cushing's like ours is...non-text book. Findling was a fall back just in case we didn't find a surgeon for my adrenal case. At least one of those others doesn't have such a good name when it comes to Cushing's. It is good to see there are more options available than just the West Coast on the horizon.
  9. Has anyone heard from jeand?

  10. I found this interesting. I found this after reading a letter from my doctor saying I had significant proximal muscle myopathy (fancy words for my muscles hurt =p ) click HERE to read the entire article Author: Steve S Lim, MD, Consulting Staff, Department of Physical Medicine and Rehabilitation, St Clare's Hospital of Dover Steven S Lim is a member of the following medical societies: American Academy of Physical Medicine and Rehabilitation Coauthor(s): Patrick M Foye, MD, FAAPMR, FAAEM, Associate Professor of Physical Medicine and Rehabilitation, Co-Director of Musculoskeletal Fellowship, Co-Director of Back Pain Clinic, Director of Coccyx Pain (Tailbone Pain, Coccydynia) Service, University of Medicine and Dentistry of New Jersey, New Jersey Medical School Editors: Patrick J Potter, MD, FRCP©, Director of Spinal Cord Injury Program, Associate Professor, Department of Physical Medicine and Rehabilitation, Parkwood Hospital, Lawson Health Research Institute; Francisco Talavera, PharmD, PhD, Senior Pharmacy Editor, eMedicine; Kat Kolaski, MD, Assistant Professor, Departments of Orthopedic Surgery and Pediatrics, Wake Forest University School of Medicine; Kelly L Allen, MD, Consulting Staff, Department of Physical Medicine and Rehabilitation, Lourdes Regional Rehabilitation Center, Our Lady of Lourdes Medical Center; Denise I Campagnolo, MD, MS, Director of Multiple Sclerosis Clinical Research and Staff Physiatrist, Barrow Neurology Clinics, St. Joseph's Hospital and Medical Center; Investigator for Barrow Neurology Clinics; Director, NARCOMS Project for Consortium of MS Centers, Phoenix Author and Editor Disclosure Synonyms and related keywords: steroid myopathy, acute steroid myopathy, chronic steroid myopathy, critical illness myopathy, excess endogenous corticosteroid production, adrenal tumors, excess exogenous corticosteroid production, asthma, steroid treatment for asthma, steroid treatment for polymyositis, steroid treatment for connective tissue disorders, steroid treatment for rheumatoid arthritis, fluorinated steroids, nonfluorinated steroids, prolonged administration of prednisone Background Steroid myopathy is usually an insidious disease process, which causes weakness mainly to the proximal muscles of the upper and lower limbs and neck flexors. Cushing originally described it in 1932. Muller and Kugelberg first studied it systemically in 1959. An excess of either endogenous or exogenous corticosteroids is believed to cause the condition. Excess endogenous corticosteroid production can arise from adrenal tumors. Excess exogenous corticosteroid production can result from steroid treatment for asthma, chronic obstructive pulmonary disease, and inflammatory processes, such as polymyositis, connective tissue disorders, and rheumatoid arthritis. click HERE to read more
  11. Im not sure you can bring anything new to the table on an appeal. What type of things did your initial claim bring up?
  12. There are at least three other drugs not including RU486 that have been in use for a period of time. I think I can remember 4 or 5 of them including RU486 used to treat Cushing's. Some of them cause chemical death to the Cortisol producing part of the adrenals. Some of these are used when surgery is not an option. The Keto is doing it's job on me. I am starting at 400 mg x 2 daily this week. I have lost over 10 lbs, my skin is bone dry and I am working more than I could before.
  13. May the angels carry you home in comfort...we will meet again, in perfect bodies.

  14. Listen to Lisa E....Jaimie and her got me on the radio =p
  15. Nice find MaryO...maybe a doctor closer to home for some people??
  16. I certainly wouldn't be wasting time or money going to see Vance after her thoughts and ideas. Before the internet, people went to the library and looked at medical books there. The internet makes it easier. When modern medicine fails the modern patient, the modern patient must become the detective. He must do this with all tools available, being cautious and methodical in all aspects of their reading. They must take care to seperate fact from speculation. How can the modern patient be wrong in taking a proactive approach in their own care when the doctors refuse to do so?
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