Discussions By Condition: Medical Stories

Benign tumors on pituitary-prolactinemia

Posted In: Medical Stories 0 Replies
  • Posted By: genihanna
  • October 14, 2009
  • 03:08 PM

I have what's called a pituitary adenoma (a cluster of tiny benign tumors on or near my pituitary gland in my brain and also near to or on my optic nerve)- some call it a prolactinoma. I don't have periods anymore - not formal menopause tho. The way I foud out I have this was a blood test that said I had "high prolactin levels" - huh?! So? And? :confused: I guess I can't have kids, but I've never tried. Doctors don't really seem to understand this condition nor know what to do or what it will do to me. They downplay its seriousness or importance - maybe 'cos it's benign. BUT I'm the one who has it, I'm the one with the headaches and the declining eyesight. I'm the one who was prescribed meds to "take for life" so it won't grow. No one knows exactly where it is or how big it is - my last doc prescribed Bromocriptine (he must have looked up my symptoms and saw that this drug (aka Parlodel) was what everyone else is using to "treat" it. He even requested an MRI for me, but after 2 attempts to get an accurate reading (one time I coughed and they stopped the test; another time they gave me sedatives, but my toes wiggled anyway) - but still I don't know what I should - an MRI (or CT, if they can't get the MRI) is standard! Now I have moved and have had to start with another doctor - I have to actually explain my problem to them - not vice-versa. Then I've got to wait on them to get familiar enough with it to be able to help me. The doctor I signed up for is on "indefinite medical leave" so they gave me some flunkie - This "new" doctor simply re-prescribed what I had been given the year before, even though I had been off the meds for close to a year - and when I took them, I got sick as ***l - and I am getting worried - supposedly the tumor may grow if you stop the meds - what's to say it hasn't done that already in these past months that I've been off the Bromocriptine!? I've got an appointment next week with supposedly a "more experienced" doctor - I am dreading it! Any advice or experience with what I've got? I don't want to be blind by the time someone figures out what the real story is!:eek:

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