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It's About Time There Was Some Support!

 

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Welcome to Cushie.info!
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Welcome to the latest Cushing's site, Guest!

July 21, 2012 was our 12th birthday!

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Last Updated ( Friday, 15 March 2013 08:57 )
 
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Comments  

 
0 #7 MaryO 2011-05-26 09:40
Quoting franski:
What can they do if you have no tumors but you are still pumping large amounts of cortisol and all the symptoms? i was diagnosed years ago but did not get treated and now it's gotten a lot worse but the doctors where i live are baffled because there are no tumors.They have mentioned Mitotane therapy? anyone have this before?


Someone posted this for you on the message boards at cushings.invisionzone.com/index.php?showtopic=49939, Franski:

"The only thing I can think of is that you might need an adrenalectomy. But then you'll be living with addison's disease the rest of your life. You might want to mention the adrenalectomy to your docs."
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0 #6 franski 2011-05-03 13:30
What can they do if you have no tumors but you are still pumping large amounts of cortisol and all the symptoms? i was diagnosed years ago but did not get treated and now it's gotten a lot worse but the doctors where i live are baffled because there are no tumors.They have mentioned Mitotane therapy? anyone have this before?
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+1 #5 Tiffany 2011-01-25 23:08
Finding a local support group is harder than I gave credit for. I am post op from adrenal surgery in November, then in Jan I had emergency surgery for my galbladder. No work and no school makes for unsure circumstances. I feel weaker now than before the surgeries and I have more pain. I have lost my appetite, and constantly feel tired. The good news is that I got my mentrual cycle back on x-mas day after over a year. I sleep more which is great but not so much sometimes. My memory ugh! Energy level is almost non-existant. Good news is that I have lost some weight 167 down to 144. There have been some positives and some negatives, but only time will tell.
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0 #4 MaryO 2011-01-15 09:48
Natalie, I'm sorry you didn't learn anything about recovery before your surgery. It's possible that your doctor doesn't have enough experience with Cushing's to know what to tell patients, either.

There are some success stories on the message boards at cushings.invisionzone.com/index.php?showforum=38 but most of the people who feel wonderful want to get back to "real, normal life"

There are also a few success stories on here at http://www.cushie.info/index.php?option=com_content&view=article&id=841:letter-to-cushies&catid=46:success-stories

I, myself, am a success. I had only one pituitary surgery in 1987.

I hope that soon, you'll be able to post your own success story in a bio or on the message boards so that others will know that there is a light at the end of the tunnel :)
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0 #3 Natalie 2011-01-14 21:50
I was diagnosed with pituitary cushings in October and had a dumbbell shaped tumor removed Nov. 29th. My dr never told me a thing about what was going to happen to me. It's been about 6 weeks now and I'm feeling terrible! I can't sleep, my body hurts and I'm emotionally weird. When I looked up recovery side effects I found that due to the length of time it took for the cushing's symptoms to show up, it will take a long time for all this to go away. I haven't read a single success story. I was hoping someone might be able to tell me there is a light at the end of the tunnel...
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0 #2 MaryO 2010-12-29 13:28
Unfortunately, Cushing's can hide behind most all of those other problems your friend is having.

I hope by now she has gotten to a doctor who can help diagnose the root cause of her problems whether it be Cushing's or something else.
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+1 #1 joanie 2010-11-03 18:05
Hi, I think my friend has Cushing's, we have talked about it and she now has an app. to see an Endo. My friend has been diagnosed w/ diabetes, high blood pressure, high cholesterol, reflux, and a myriad of other things including a bout with Colo/rectal cancer. Can Cushing's hide behind any of these other problems.
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Judy, pituitary bio

Doctor says I do have Cushings, but just still looking for the originating site.  Cortisol level twice the upper limit of normal. Had symptoms for YEARS, but no one pulled it all together until th [ ... ]


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Marie, pituitary bio

My name is Marie.  I joined this site to help my friend.  She has had her Pituitary Gland and both Adrenal Glands removed. She has been in the hospital twice since the second Adrenal Gland was remo [ ... ]


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