teven (sowens) Listen as Robin Smith (staticnrg) hosted an interview with Steven (sowens)

Steve returned to talk about support networks and agencies. His topic was building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc). Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.

Read Steve's bio.
Read Steve's newspaper article.
Listen to Steve's Archived Interview from April 10, 2008
Listen to Steve's Archived Interview from May 29, 2008

Keywords: ACTH, adrenal, adrenal sampling, agencies, cancer, Cushing's, daughter, diurnal rhythm, Dr. Ian McCutcheon, Dr. Ted Friedman, Dr. William Ludlam, endocrine, endocrinologist, HyperBeta Adrenergic Syndrome, hyperplasia, IPSS, job coaches, joint pain, MD Anderson, metastatic, MRI, pheo, pituitary, police, PT/OT, rehab, support networks, surgery, therapy, tumor, wean

Leslie

Leslie had pituitary tumors removed twice at the University Of Michigan.

After her second surgery she gave birth to her second baby.

She has had another recurrence and has had Gamma Knife Radiation April 3, 2008. She is not yet sure if the Gamma Knife worked yet.

Read Leslie's bio at http://www.cushings-help.com/leslie3.htm

Keywords: ACTH, baby, breathe, cortisol, c-sections, dermatologist, diagnosed, Dr Chandler, Dr William Malarky, Dr. David E. Schteingart, elbows, Endocrinologist, Gamma Knife Radiation, gland, halo, helmet, ICU, injections, ketoconozole, knuckles, moon face, MRI, neck, night sweat, nodule, Ohio State, Pituitary, pneumonia, pregnancy, pregnant, scar, stretch marks, tired, transphenoidal, tumour, University, University Of Michigan, urine, weak, weight

Jackie (samsmom) & Jordan)

Jackie (samsmom) & Jordan: Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well.

Later at the NIH, the gene (PDE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters.

Sam's doctor at NIH, Dr Stratakis has written several papers on Sam's case including one that was published in April, 2008. For more on PDE11A or iMad, please see A cAMP-specific phosphodiesterase (PDE8B) that is mutated in adrenal hyperplasia is expressed widely in human and mouse tissues: a novel PDE8B isoform in human adrenal cortex.

Jordan, Jackie's oldest daughter, has recently had her adrenals removed. She had one removed laparoscopically and the other was an open adrenalectomy. She participated in this chat as well.

Read Jackie's bio at http://www.cushings-help.com/jackie2.htm

Keywords: adrenal, atrophy, bilateral adrenalectomy, BLA, blood, bruising, CT scan, cyclical, Discovery Health TV, Diseases Doctors Miss, Dr. Constantin Stratakis, endocrinologist, epidural, gene, gene mutation, hereditary, hyperplasia, iMAD, laparoscopic, Liddle Test, Munchausen's, Mystery Diagnosis, NIH, Parkinson's, PDE11A, Stanford, stress, surgery, tired tumor, ufc, weight

Ferol (FerolV)

Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by.

Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings'. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. An MRI confirmed the tumor involvement and pituitary surgery was performed 09-30-05.

Read Ferol's bio at http://www.cushings-help.com/ferolv.htm

Keywords: 24-hour ufc, ACTH, adenoma, adrenal insufficiency, artery, blood tests, cholesterol, chronic, clotting, cortef, cortisol, Cushing's, cyclic, diabetes, diagnosis, Discovery Health, dynamic MRI, emdometrial ablation, endocrinologist, ENT, free T-3, Free T-4, hair loss, hearing loss, hirsuitism, hydrocortisone, hypertension, hysterectomy, Loestrin24, Metformin, nausea, nerve, neurosurgeon, night sweats, NIH, OB-GYN, physical, pituitary, plaster cast, prolactin, scar tissue, scoliosis, sinus, skeletal soft tissue degeneration, steroids, surgery, symptoms, testing, tired, thyroid, treatment, urine, uturus, vaginal atrophy, wean, weight

Listen as Monica (Monicaroni) talks about the challenges she's faced maintaining her music career as a professional violinist while in testing and treatment.

Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.

Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!

From Monica's bio

Keywords: 24-hour ufc, Addison's, adenoma, adrenal crisis, anemia, antibiotics, B12, cholesterol, cortisol, cushing's, diagnosis, Family and Medical Leave Act, fatigue, fish oil, FMLA, gamma globulin, Gatlin Brothers, genetic, growth hormone, immune system, infection, insurance, IPSS, medications, pituitary, positive attitude, red face, sinus, steroids, strength, surgery, swelling, symptoms, testing, tired, treatment, triglicerides, Vitamin D, wheelchair, wean, weight