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A very long story but I'll keep it short. I had cushings disease in my twenties (also had nephritis at the same time). Anyway, went undiagnosed for 4 and a half years. It was hell. I know it's "difficult" to diagnose but I was a classic case apparently. Had every symptom in the book. So I'm now 44 and it's back! 20 years later. Can't believe it. Although this time I was taken seriously - unlike the last time, docs kept telling me to eat less and go on a diet! I couldn't possibly have eaten any less, in fact anything I did eat I made myself bring back up again.
This time the symptoms aren't as bad - probably because it hasn't been going on for as long. It's still taken them well over a year to diagnose me. A year and a half later and I'm now officially cushingoid. Seeing my surgeon next week and then have surgery. I was told (in my twenties) that I was cured. No-one told me it could come back and of course there was no internet in those days. It's 20 yrs later now. There's almost too much information available now. I started to think I can't possibly have this again or maybe I have psuedo cushings. Of course I don't (and I'm not saying psuedo cusings is any less of an illness!!! Again I've gone from a fairly attractive, fit, slim, happy, normal person to a big fat, ugly, paranoid, mad woman. I knew I had this again but as I said, it's taken over a year for a diagnosis. Test after test after test. I truly think no-one at work believes I'm ill, probably think I eat too many pies!
I know I'm going to get better but can't quite believe it at the moment. I remember feeling like that in the 90's too. The worst thing for me is my face, I barely recognise myself. I've been congratulated on my "bump" at work by some numpty who lacks tact although is a very nice albeit scatty woman! I can't deal with stress AT ALL. I had a cry tonight that's why I'm on here. I need like minded people who actually understand. I'm a proud person and take pride in my appearance - I can't do that right now. I hate this.
But I know there's light at the end of the tunnel, I just wish I was even half way there. :-) or :-( - a bit of both.
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Comments
Totally know what you are going through i am due to have piturity surgery in a few wks time. I am very frightened that after surgery its going to be a long journey to recovery and am very bothered it will come back. No one seems to understand how and what i am going through as in there eyes i look ok. I really would love to meet someone who understands what this very misunderstood disease is like. Please get in touch if you need someone. xxx
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