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HDiana's Story...

My story sounds just like yours. Before I begin, I just want to say I read robin's experience to one of her dr appts and serioiusly cried (which rarely happens)! I thought you were writing about me. I was diagnosed 3+ years ago with pit tumor (prolactinoma) which was asymptomatic for a couples years after Dostinex.

In about April of 2005 I began to experience horrible symptoms: migraines, rage!, acne, muscle spasms, brain fog, ringing in ears, low libido, irregular periods, and worse of all (for me) 25 lb weight gain in two months. I am an avid exerciser and lift weights 2-3 times a week and do cardio 3-4 times a week, so there should have been no reason to gain weight. I lost count of how many doctors I have been to including two kinesiologists, three endos - one at U of M and that's where my story sounds a lot like robin's. I brought my exercise and food journal with me and he didn't look at it, but called me to say he couldn't figure out "what" was wrong, so I should go on a 1500-calorie a day diet. (I fired him)

I have a great family, who tries to do what they can to help me feel like "I'm not crazy" when I go to yet another doctor who tells me they don't know what's wrong and refers me to another doctor.

Honestly, I have seen 12+ doctors (some of them several times) and am now onto another; she is not a dr, but a PA-C with hopes that she can help to figure out what's wrong with me. I don't have the rage anymore, but in its place, I have this feeling of my neck constantly being squeezed - like someone has wrapped their hand around my neck with the fingers directly underneath my ears and they are squeezing. Yet, I still have the remainder of the list of symptoms. And, yes, still continuing to gain weight -- now at 35 lb since the beginning of this nightmare!

Like all of you who have not been diagnosed with Cushing's - I also don't want to have a horrible disease, but I DO want to know what IS wrong with me when all of my symptoms fit into the cyclic Cushing's category.

I have had dozens of tests done, which almost all came back as normal, or borderline normal. I continue to have galactorrhea (despite PRL at 17).

At present, I can honestly say thank God I no longer have the rage and my headaches have minimized to only approximately 3-4 days a week as opposed to 7 days a week (they were diagnosed as mild migraine headaches with photophobia) and are not severe "all" the time.

If anyone out there has ANY suggestions as to where to turn at this point, I am MORE than willing to listen. Thanks for reading my story (which probably sounds a lot like yours).

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