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Everything posted by ltw

  1. I saw online that it is still going and being recorded, but the streaming stopped. We will be able to hear the rest when the chat is archived. I guess that means once it's "posted". LisaMarie
  2. Mary, Please note this question is not at all meant to be offensive. I know Dr F well enough I could ask him this in person, but since there won't be names attached to the questions, if you think it is too forward, just delete. Thanks. LisaMarie On a more "nosey" note...We appreicate all your help, care, and concern that you show to all your patients. We also appreciate all your hard work dedicated to research in the hopes that you can discover things that will allow you and other good doctors to help us better, and sooner. Since so many people have come to rely on you as their main cushings doctor, any plans to expand your "online office"? We realize their are only so many hours in the day, so I doubt you could expand your practice hours, but maybe another assistant to help with paperwork, etc.? With all the modern technology available today, maybe someone could help out remotely/electronically and take some of the burden off Lynne. Just a thought...
  3. Question on ACTH stim test...From what I understand, your cortisol should double from baseline. If one starts at 21 baseline, and then drops to 13 after the stim, can any conclusion be made about the function of the adrenals? Thanks. LisaMarie
  4. Question on pituitary hyperplasia...We've talked before about what it is, and if I understand correctly it's the "funky" cells filtering throughout the gland. This gives the surgeon no "clear target" as I was once told. If a doctor is leaning toward pituitary hyperplasia during the workup, what is the preferred treatment? It doesn't seem to make sense to go to surgery if the entire gland is affected. Would removing the half the gland give you "less" cushings sympotms? Seems like that is risky, possibly making hormonal imbalances worse? Logically it seems medication or BLA makes more sense? Thoughts? thanks. LisaMarie
  5. So glad Dr F will be back...Here's a couple of questions for him: 1. A lot of people on the boards find they have many symptoms of rheumatological diseases, along with very high labs such as sed rate, CRP and aldolase (muscle enzymes). After many, many lab tests, it seems all other diseases are ruled out. Does elevated cushings cause these symptoms, particularly muscle pain, to the point it would show up in blood work as elevated enzymes? In other words can elevated cortisol "eat away or waste away" your muscle tissues? 2. How come some patients can never get highs in different tests at the same time? I have had only high 17s, then 2 years later get only high midnight serums, with only one high saliva over 3 years. No doctor wants to rule out cushings, but no doctor wants to diagnose either. Any advice on getting to the bottom of this debate? Thanks. LisaMarie
  6. NOVEMBER 27th Seriously??? You would *think* something would be available before then???!! That just makes me nuts!

  7. ltw


    I have to agree...I love the glitter, and purple is awesome, or red is good too. I also think the "does my tumor make me look fat?" or something to that affect...I must have an odd sense of humor. To me, it's a conversation starter, which will increase awareness in the long run. LisaMarie
  8. From my Rheum. doc: this indicates the possibility of a rare form of cancer...but don't worry about it yet..!???..Me: ok, sure, no problem !?!

    1. jennyr


      Of course, no need to stress about that! :( Geez! So what was it that makes him think cancer? (((hugs)))

    2. mrsb91986


      OH LIsaMarie, when it rains it pours. What is going on that precipitated this? You are in my prayers always. Ginormous hugs coming to you.

    3. ltw


      One of the screening labs came back funky indicating possible myeloma, which is a cancer of the plasma cells gone wrong mainly in the bone marrow. I'll post about it soon...been pretty tired working on my GH stuff with attorney.

  9. Just stopped by to catch up. You have been through a lot! I'm glad you are over the worst. Thanks for the inspiration and pep talks!

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