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Heather's Story

Hi, my name is Heather Disney. I am 25 yrs-old, newly married and currently undergoing the millions of test for Cushing’s. All I can say is this website has been the greatest blessing!

My symptoms began several years ago when I was around 20 and since then a cascade of diagnosis have followed: interstitial cystitis, PCOS, fibromyalgia, insulin resistance, high blood pressure and so on. Each year I have continued to get worse and I’ve gained over 100 pounds. Each doctor I have gone to has given me a different diagnosis, but all with the same advice…lose weight. Every time I explain that I can exercise like crazy, eat very few calories a day and I still don’t lose anything. My favorite response a doctor gave me was “We know there’s something wrong with you; we just don’t know what it is.”

I don’t sleep, my body aches continually and my hair has begun to fall out by the hand full, yet I’m growing hair in places I should not. I have a large hump at the base of my neck on my back and fat around my neck. My hump had become so noticeable that I try not to wear any shirts that hang below it or wear my hair up.

My family doctor is currently running more test, but I have serious doubts that she believes that it’s anything other than my weight, but she is humoring me at this point and has done the 24 urine test and several blood test ( I’m still waiting for the results.)

However, there is light at the end of the tunnel. I have an appointment with Dr. Isaacs (who is one the CUSH Advisory Board) on Feb. 22, 2007. If anyone can tell me if they’ve had any experiences with Dr. Isaacs I would appreciate it. Also, any advice on the waiting, I think that’s been the hardest part of all, just waiting for the test results. My worry now is what if they come back inconclusive or negative. I just feel that it’s Cushing’s, I have every symptom and every sign, but I’ve read so many stories on here of women who have gotten negative results for years and in the end had Cushing all along, just a poor diagnosis. I guess I’m just looking for reassurance, just to know what’s causing my body to go so crazy. If anyone can give me any advise on who to see, what to ask for, where to start…etc.

Thanks in advance to anyone who takes the time to read this and respond, it means a lot.

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