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kalimae7371

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Everything posted by kalimae7371

  1. Why, if she had cushings as it states in this, would one of her possible treatments have been steroids? This all stinks to high heaven if you ask me!! How sad . . . . .
  2. I tried coming off of my anti-depressants a few weeks back, thinking that maybe my GH was helping in that area, and I found out quickly as did everyone else in my family that it was a BAD idea!! I got really angry and emotional. I had to quickly get back on them! I had weaned off just as you are suppose to do. Didn't just come straight off of them incorrectly. That was the first thing the doctor asked me. But NO I did it the right way. I also went back on them the right way. Cushings just does something to us . . . . and I will be the first to admit the Lexapro really helps me a LOT!! It makes me calmer and more relaxed. Wish that I didn't need but . . . . . Hugs Amy
  3. That's why we don't have the glass door on our shower now! Ooops, I'm going to tell on myself! Well, obviously this was before I was cured . . . . I got mad one day and put my foot through it and instead of fixing it we just put a bar and shower curtain on it. Well, hubs said I might do it again. Roid rage can make a person do some bad things . . . . .
  4. I watched both segments! Both were great . . . . first about pituitary deficiencies and second on pseudo-tumor cerebri (intracranial hypertension). Thing I can't get past is how doctors just write people off and don't believe them! I'm so mad after watching the second segment that I could scream!!! That poor girl! Her parents had to be the ones to "go to bat" for her and they failed her. Thank goodness they found out what was wrong and fixed it just in the nick of time. Robin . . . . thanks for posting about this episode! That's the only reason I knew it was on!! Hugs Amy
  5. OMG . . . . my BMI is still off the charts even though I've lost mega amounts of weight!! BUT, my waist is much smaller now. I actually have the *figure* of a woman again. Big boobs, small waist and big hips. OK . . . . so my small waist is a definite PLUS!! One thing in my favor!! It's all so discouraging because the way I see it, and read it, we would all have to be the size of bean poles to fit into the nice little medicals "molds". (did I spell that right)? <shaking head> Thanks for posting this Lisa! It does help to at least know where we stand. I must say that I'm getting closer than I was even though I'm still on the wrong side of that 30! Maybe I won't hit *dead* before I get there! Hugs Amy
  6. I haven't even read it yet, but will print it off (as soon as I figure out how to get my printer to work on my laptop with Vista - ) Thanks so much for posting! This is something I really am worried about especially since I can't get the replacement! Hugs Amy
  7. DANG IT!! I've got an appt. at Emory tomorrow afternoon. It will be late when we get home. Will it be recorded so I can listen to it later? Robin - you go GIRLFRIEND!!
  8. Can't see it . . . giving me an error message.
  9. I would love to order some for the ladies I used to work with . . . . . which now would be just 2 because they got rid of everyone else.
  10. Can we buy billboards and send this message to the masses! Thanks MaryO for your time and research!
  11. Terry, This just showed up on my last MRI (after two pit surgeries and two surgeries to repair CSF leaks). Mine probably isn't apoplexy . . . . the best explanation that I can find is that due to the CSF leaks (I guess) my menengies has "preforated" into the sella and pressed what little pituitary I have left, against the wall of the sella. Hmmm . . . . who knows! I can't wait until my appt. with the neurologist so that I can ask 1000 questions! Intracranial hypertension (which we are pretty sure I have) can cause empty sella and both cause headaches. So that's an answer as to the severe, debilitating headaches that I've been having. Sorry for the misspelled words . . . . my brain is too tired today! Hugs Amy
  12. WOW . . . . Terry, that IS VERY INTERESTING!! I was sitting here reading what MaryO posted, thinking this is probably what happened to me, and then you post the same thing. Thanks for the info Ladies. Big Hugs Amy
  13. AMEN Sister . . . . . I truly believe that a lot of things we eat were produced using steroids for faster production and you got it "more money". Great article . . . . . thanks Robin!! Amy
  14. Something very similar happened to my husband's co-worker. He was rushed to the hospital for heart *issues*. They couldn't figure out exactly what or why. The doc walks into his room and shakes his "clamy, moist" hand and knows immediately that he is so hyperthyroid it is affecting his heart. Thank goodness for good docs.
  15. Thanks for posting!! I'm going to print and share with my docs also as I continue to have these debilatating (sp?) headaches. I have some issues that make me wonder whats up with my hypothalamus . . . like can't control body temp. Hugs Amy
  16. This is all very interesting! First of all, the doubt. Why do we or will we always have that little bad voice in the back of our brains saying "but what if it isn't / wasn't cushings"? I know, I know, because so many doctors have beat it in our heads that there is no way we could possible have or had cushings. Secondly, the etopic source . . . . . cause you see after two pit surgeries and a BLA I've now been told that I have a "spot" on my lung. Based on my "endocrine" symptoms I really don't think it is an ACTH producing "spot" but there's that "wonder" and "doubt" . . . . . did we really get it right? Yes, we did . . . . . BUT . . . . what the heck is this spot? I was one of the ones who had very high ACTH numbers during my CSS (IPSS). My right side went to over 20,000. For some reason that really removed doubt from my mind. Too early in the morning for me to be thinking so hard . . . . . .
  17. You know what I like about this article even more than the "false-negative" aspect (which is very important) . . . . . is the fact that the headline reads PSS used for diagnosis of cushings disease. Hmmmm . . . . think maybe somebody is getting a clue.
  18. http://health.msn.com/health-topics/sleep-...5&GT1=10710 Switch for Internal Body Clock Found Discovery could lead to new treatments for sleep disorders -- Robert Preidt WEDNESDAY, Dec. 12 (HealthDay News) -- The chemical switch that activates the genetic mechanism regulating the body's internal clock has been identified by University of California, Irvine, researchers. They added that the switch offers a target for the development of new drugs to treat sleep disorders and related problems. The study found that a single amino acid triggers the genes that regulate circadian rhythms. Because of the complex genes involved, the researchers said they were surprised to find that a single amino acid switched on the body clock mechanism. A modification in a single amino acid in the BMAL1 protein activates the genetic processes involved with circadian rhythms, the researchers found. If this amino acid modification goes awry, the genetic switching mechanism can malfunction, resulting in circadian rhythm-related disorders. "Because the triggering action is so specific, it appears to be a perfect target for compounds that could regulate this activity. It is always amazing to see how molecular control is so precise in biology," study author Paolo Sassone-Corsi, Distinguished Professor and Chair of Pharmacology, said in a prepared statement. Sassone-Corsi is currently testing antibodies that can target the activity of this amino acid in the BMAL1 protein. The study is published in the Dec. 13 issue of Nature.
  19. You have GOT to be kidding . . . . . . right? I would have probably burned that bridge and told her where to get off!! How in the hell do you make your body act like a disease (and get diagnostic tests that show that disease) by reading the internet? That ticks me off big time. What do these doctors think we do . . . . . . sit around and try to find some odd off the wall "thing" so that we can completely stop our lives and sit home all alone with no life at all. GEEZ . . . . . .
  20. I need about a 50" computer monitor so that I can increase the size of the text . . . . . . my eyes have gotten so bad that I can barely read a lot of the posts . . . . . . but . . . . I wanted to weigh in here . . . . . I totally get it . . . . . Suicide . . . . . . I've thought about it so many times . . . . . and even planned it out . . . . . . but . . . . . alas, something stops me. There is just enough positive left in me to say there has got to be something after all of this mess.
  21. Am I reading this right? Sounds like they are saying that IPSS can be used to clairfy / make a cushings diagnosis where other tests have not given a clear cut picture. Hmmm . . . . . this IS interesting.
  22. Very touching . . . . . what a wonderful program. Bless her heart.
  23. Man oh man . . . . . when will they ever get it. It is so sad and scary to read of such a tragedy. And to read his symptoms . . . . . boy does that hit home. Thanks for posting Robin. Amy
  24. I'm glad to see this info posted also. Just as with the disease, I think we all vary in our recovery times based on a lot of factors. In my case I had several unanticipated complications. It also seems that the older you are that maybe it's a little harder ? ? ? Not sure if that's a fair statement or not, just my take on things. For all of those out there that read my posts, I sincerely hope that they don't get discouraged. I'm so looking forward to turning the next corner in my recovery and truly think that I'm well on my way. As Dr. L continues to work with me and get me on more replacements, things will get better. I don't regret my BLA at all!!! Thanks MaryO for all the wonderful info you provide. Amy
  25. OK . . . . my eyes hurt too bad and I'm too dizzy to go back and read this entire thread. How did I miss it anyway? But, sounds like your working on t-shirts . . . . .? If so, count me in. I would take at least two because my husband is a survivor also . . . . . he survived me having cushings. Sorry I'm so out of it, Amy
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