CushingsHelp

CushingsHelp

36p

48 comments posted · 0 followers · following 0

394 weeks ago @ Cushie Info - Day Fifteen, Cushing's... · 0 replies · +1 points

Thanks so much, Kate :)

398 weeks ago @ Cushie Info - Day Three, Cushing's A... · 0 replies · +1 points

From Facebook:

From Carolyn: Your story is an inspiration. Thanks for sharing. Thanks for the hard work you put into your website.

398 weeks ago @ Cushie Info - Day Three, Cushing's A... · 0 replies · +1 points

From Facebook:

From Heidi: I was that perfect patient too, but I got burned badly by trusting too readily. Now, with PTSD from my experiences on board, I'm battling a decades worth of ever increasing symptoms that could be Cushing's. I've been treated worse now that I've gained a voice, but I refuse to just let myself deteriorate like this to gain favor or make somebody's job easier. Without Cushing's Help and Support I'd never be able to manage!.

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

From Facebook:

Marlene said: I presented with symptoms for about 7 years before a doctor guessed I had Cushings.

Amy said: My tumor was undiagnosed for over 13 years. A lot of damage was done.

Melissa said: 7 years and 150lbs later...

Olga said: 10 Years and 162 lbs later....

Susan said: Over a dozen years for my daughter! It isn't easy to diagnose, PCOS, DM, HTN, Obesity common diagnosis all get added to a long list before the true diagnosis of the Cushing disease is even consider. A zebra amongst the horses.

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

From Facebook:

Kevin said: I was sent to a local Endo after gathering info with my GP based on my suspicion of Cushing's.... All the standard stuff, High Bloodsugar despite 4-5 different meds, High Blood Pressure despite 4-5 different meds, 7 unexplained rib fractures that didn't heal for over a year, Dexa scan confirmed Osteopenia, abdominal scan showing bilateral adrenal hyperplasia, moon face, buffalo hump, central obesity, really obvious purple striae, easy bruising and slow healing, and close to 2 years of daily food/medication/activity logs (detailed enough to be diagnosed OCD), Oh, and a single high plasma cortisol result....

I told him I thought it was Cushing's, more specifically a pituitary tumor and presented him with my piles of evidence... He gave me the standard "It's too rare", you need to eat better, exercise more, and remember to take your medications... then sent me for a sleep study because he suspected it was all just sleep apnea... It took 4 more visits over several months while he ruled out every possible disease he had a test for before someone else at his practice ordered another Cortisol & ACTH which were both several times the maximum range... Finally got a Pituitary MRI and when the results came back he acted like he had made some great discovery. Months later post-surgery when I went back to the local Endo he spent the entire office visit explaining to an intern how great he was for making the discovery that saved my life etc...etc...

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

From Facebook:

Stephanie said: same here. he also told me i was obese but just in the stomach area.

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

From Facebook:

Colleen said: I had a general practitioner tell me, without ordering any tests at all, that I didn't have Cushing's because it's "too rare."

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

From Facebook:

Amy said: My tumor was undiagnosed for over 13 years. A lot of damage was done.

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

From Facebook:

Marlene said: I presented with symptoms for about 7 years before a doctor guessed I had Cushings.

400 weeks ago @ Cushie Info - Day Five, Cushing's Aw... · 0 replies · +1 points

Thanks so much, Dawn!