Cushings- put on hold

Posted , 4 users are following.

For so many of us with Cushing's-

Though I'm still undiagnosed

We have to wait for a doctor to clue in

Before we get diagnosed.

I mean if i didn't spend hours researching about health, i would have no idea what is going on right now

Right now, i can hardly move my neck because of this growing hump on my back

And would happily take a couple of percosets

Even though ive never had them

0 likes, 6 replies

6 Replies

  • Posted

    I waited two more years after self diagnosing myself and screaming to my doctors that I had Cushings. It wasnt that they didnt listen to me at the time because they did test me, urine and blood tests. But all tests come back normal. Thats when they dropped the ball. I should have been tested more frequently since I showed all the physical symptoms plus blood pressure, pre diabetic. Looking back I wish I had been more persistent and not let 2 more years pass. Since I always try to find a positive in everything I think "well maybe I wouldnt have crossed paths with my two amazing surgeons." Today they gave me the results of my 3 month MRI and everything looks good. I am grateful for today. Dont give up and listen to your body.

  • Posted

    Thanks Patty,

    Im glad you were able to get the surgery

  • Posted

    Hi Please don't give up, it took 3 years for me to be finally diagnosed. GP's are so unfamiliar with Cushings that they want to be absolutely sure before they refer for tests etc.  Keep pestering people until they listen to you!


    • Posted

      Yes , i'll try

      Every doctor assumes i may just have diabetes

      But i don't.

      I will probably have to travel to another countfy just to get diagnosed

      And i live in Canada

  • Posted

    I’m sorry you’re going through this. This condition is awful & takes Drs ages to diagnose. I know how you feel with the hump, I also struggle with the swollen neck & face. It makes me gag! My Dr diagnosed me pretty much straight away with Cushing’s syndrome as I’m on steroids, but now after running tests my pituitary tests are abnormal so back to the drawing board.. it’s awful going round in circles but keep going as eventually you’ll get there... Sending hugs all the way to Canada xoxox 

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