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ADRENAL TUMOR REMOVED

helenm1963
  • By helenm1963 · New reply yesterday at 11:49 pm
  • Discussion in Living with an endocrine system disorder · 3 replies
  • Hi Everyone I had a 8cm tumor right adrenal removed 6 months ago I feel awful aches and pains all over and my urine seems so strong (brown) doctors have checked my cortisol level and they said it was ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Turner Syndrome Interview

kitchneralex
  • By kitchneralex · Posted April 15, 2014
  • Journal · 0 replies
  • Hi everyone! My name is Alex Kitchner, and I am a teacher candidate at the University of Wisconsin, Whitewater. I am study Special Education and as an assignment in one of my classes, I have been given ...

Turner Syndrom

kitchneralex
  • By kitchneralex · Posted April 14, 2014
  • Discussion in Family and friends · 0 replies
  • Hi everyone! My name is Alex Kitchner and I am a teacher candidate in Wisconsin. I attend college at the University of Wisconsin-Whitewater, and for one of my classes have been given the opportunity to ...

Taking the sting out of cancer

joyceg98
  • By joyceg98 · New reply April 14, 2014
  • Journal · 4 replies
  • Mike and I spoke with Shannon and Dave from Wind River Cancer Wellness Retreats in the beautiful woods of North Carolina. They offer retreats -- free of charge -- to men and women living with any kind ...

Born with Panhypopit

GoldenMommaBear

Not well.....

kvsuzy
  • By kvsuzy · New reply April 12, 2014
  • Discussion in Living with an endocrine system disorder · 6 replies
  • It's been 27 months since my surgery and my right adrenal gland still isn't working. This weekend I crashed again. Don't let anyone tell you that psychological stress won't cause a crisis because that ...

Ilene, Lizzie and Joyce at IKCC

joyceg98
  • By joyceg98 · Posted April 11, 2014
  • Journal · 0 replies
  • Ilene Sussman, Lizzie Perdeaux, and Joyce Graff attended the International Kidney Cancer Coalition meeting in Amsterdam. Many of our global VHL partners were there too: Dr. Rachel Giles of the Netherlands ...

Cabergoline (Dostinex) side affects?

Iggylizard
  • By Iggylizard · New reply March 24, 2014
  • Discussion in Living with an endocrine system disorder · 1 reply
  • I've been taking 1mg of cabergoline twice weekly to treat my prolactinoma and I've been experiencing headaches the day after taking my dose every time. Is this a common side affect? I don't have headaches ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

Sources sought for article about co-insurance to pay for specialty drugs

John2
  • By John2 · Posted March 13, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 3/13/14 Dear members A healthcare journalist with the Associated Press (AP) is seeking more people to interview for an article she is researching on ...

seeing neuro endo tomorrow

Teresaf
  • By Teresaf · Posted March 11, 2014
  • Journal · 0 replies
  • Met with the Surgeon about 10 days ago. He was very optimistic. I have a 6mm tumor on the pituitary and he said he has a 90% cure rate and 1% error rate. I was very happy with that. Appointment error ...

march 3 2014

jredneck13
  • By jredneck13 · Posted March 3, 2014
  • Journal · 0 replies
  • today of all day my symptoms are at its worst.. cant eat cant sleep , blood sugar is low but thats normal for me by now.. have a apt with my PC today and see the endo on the 14 so we will see what happens ...

Had adrenalectomy but now what?

rsalas06
  • By rsalas06 · New reply March 3, 2014
  • Discussion in Living with an endocrine system disorder · 2 replies
  • I had an adrenalectomy about 4 years ago. None of the doctors ever told me I needed to have regular check ups or take any medication. I have been trying to lose weight for the last year with no luck ...

Ilene Sussman on Powerful Patient

joyceg98
  • By joyceg98 · New reply February 28, 2014
  • Journal · 1 reply
  • Mike and I spoke today with Ilene Sussman, Executive Director of the VHL Alliance, about the Rare Disease Day celebration being co-sponsored by VHLA and MassBio at the Massachusetts State House. Please ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · New reply February 23, 2014
  • Journal · 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

Introducing Photos for Inspire

Walter
  • By Walter · New reply February 13, 2014
  • Journal · 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

questions about cushing and doctors

Teresaf
  • By Teresaf · New reply February 11, 2014
  • Journal · 2 replies
  • Hoping some other symptoms are from cushing: Has anyone noticed not thinning of hair but coarseness and frizziness. I used to have shiny flat straight thin hair. Now it is frizzy and kind of curly and ...

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