And It's About Time There Was Some Support For Cushing's!
My name is Amy (Mommy) and I am new here, well at least to posting etc.. I have been reading for a while now and I thank God for this website and every last one of you who make this like the family I never knew existed. I already had put most of my story on the introduction to guests page yesterday so for anyone who feels like they are reading a repeat story, I am sorry about that.
OK, here goes, I guess I still am not quite sure what my diagnosis is completely as I am not only discovering that there are other treatments i did not know of , but I desperately need a Endocrine I can trust around here(Buffalo, New York areas) I am going to Cleveland Clinic next week (FINALLY!!!) to see Dr. Hamrahian, he is suppose to be a great Endo and experienced with Pituitary and Cushings. I am bringing all my tests MRI's, CT results etc.. I don't know if I should ask him to re test anything.
Anyway, so far since last June 2006, I have had lots of bloodwork, 24 hour urine which the Endo. said was not totally done right in the Lab. whatever that means, but yet, she did not re do the test. I totally flipped out on the phone with her when she first called me with results and the more questions I asked,the more mean and angry she got with me, When I expressed a terror of dying , she let me believe I was dying and that everyone will die someday she said so I may as well deal with this and go on with the life I have been given. I went on testing from there but I made 5 different Doctor apts. with all my other doctors from the Primary, his Practioner, The Gynecologist, a Nutritionist I just randomly picked on a sheet who turned out to be my biggest help and friend., My Dermatologist, Oh yeah, every Doctor I could think of my Fertility Doc who I have known forever now , And I went to see all these Docs because I really felt my life finally hit a major wall!
I was positive I was dying, even though I had no symptoms or feeling of illness, In my head, I needed to find someone who would confirm what I really thought I knew, I was going to die. I was having continual anxiety panic attacks, I call them terror attacks because that is what they were, undescribable! Sweating, pounding heart, crying, pacing the house could not relax or concentrate. then the emotional roller coaster of it all would leave me to the bone exhausted but, unable to sleep. I could not eat anything, (not a terrible part of this ) for the first time in my life. I lost 30 lbs. very quickly and physically was feeling more energy but emotionally, my twin boys (6 yrs. old) were the only thing getting me off the couch to do any thing. Life was feeling like it was getting to difficult to live but yet I was not suicidal, I knew how irrational it all sounded but I could not help it. Anyway, My gyno convinced me to try Counseling and Lexapro. I am on 40 mgs. and Counseling mthly.,
I have to say, I am also closer to God now and feel like I woke from a daze. I am so much better emotionally, but I have to say this is so confusing. I have to do alot of research here on your website. Thank God its here.
The second MRI did not show the tiny tumor that is supposedly is in there. But they say it is there, I had a PSSampling done in Dec. too, they didn't really explain alot to me except that my case is conflicting and they had a big meeting with other Docs to figure out what to do with me. My choices ended up being exploratory surgery, The Neuro surgeon said this is a waste of time, then there is trans phenoidal surgery to take my whole pituitary gland and then its hormone replacement forever! (I don't know how bad is that? I keep hearing different things about that too. They also said because I am a young mom, the teatment of choice is Gamma Knife to zap and kill my pituitary that way instead. But I still could end up needing surgery, huh?!?!
I guess I need lots of help. If anyone has any suggestions I am all ears! Thank you for all the responses already to my introduction posting you guys are awesome!!! Thanks again, Amy (Mommy).