Interview with Alicia, a patient who is still testing.

 

Interview with Alicia, a Cushing’s Message Board member who is still testing. Alicia writes “Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me “crazy.”

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/08/alicia-a-patient-who-is-still-testing

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Cushing’s Awareness Challenge – Day 5

From Danielle’s Cushing’s Awareness Challenge Blog

Social media dominates most people’s lives these days. You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.

You don’t get to see the low points, the every day struggles. You don’t see what keeps them up at night with worry.

Read more at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-5.html

Day 5: Cushing’s Awareness Challenge 2017

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and speciality blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.