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  Ray of Sunshine

  From kittiefoster April 25

  Hi, Mish, I just wanted to thank you for your support and response to my post. Wasnt quite sure I should post or join if I'm not diagnosed, and since this is so rare, still likely may not have this. I think it's amazing that some have diagnosed themselves here. I really think it's a miracle ANYBODY gets diagnosed with it being so rare. Hope you are feeling well today...I'm sorry for what you have gone through. Thanks again, Annie

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  Flower

  From PapillonRoseBleue April 12

  Happy Easter, Happy Spring!

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  Hug

  From JonEddington March 23

  Hi, Mish, I have been Dr. Ezzat's patient since 2003. My surgery by Dr. Schwartz was only 75% successful. Dr. Gentili tried a second surgery a year after the first, but it wasn't successful and I still have 25% or the original tumor remaining. I have been on Sandostatin LAR 30 ever since, which keeps my Growth Hormone and IGF-1 at normal levels. I go to Mt. Sinai Hospital every four weeks to see Dr. Ezzat's nurse, Lori Kingdon, and she gives me the injection. I often have mild flu symptoms (i.e. a bit of a headache, some tiredness) but nothing that stops me from doing my daily routine. How do you like pegvisomant? Do you think it is better than Sandostatin? - Jon Eddington

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  Thumbs Up

  From JonEddington March 17

  Hi, Mish7, PapillonRoseBleue mentioned that you are a patient of Dr. Ezzat and I see that you also live in Toronto. I was diagnosed in 2003, but have had no contact with other Acromegaly patients until contacted by Jon Danzig several weeks ago. Jon told me about this website, which I think is very beneficial. There are so few of us, a support group like this is a unique opportunity to share information and encourage others. Cheers, Jon Eddington

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  Little Love

  From PapillonRoseBleue March 15

  Hi Mish, Thank you for the pointers about the sinus surgery. They make a great deal of sense to me. I wonder how a person finds someone to do accupuncture. How often do you get the treatments ? Should I think about coming to Toronto to get them if they're not available here? Do you also see Dr. Ezzat? Someone made a post and recommended him to me. My insurance would not pay for him but would reimburse me all but $5 for his office calls..... I think I might do what Jokey does and put some Calla Lilies in and have them be in your honor, but if they need a lot of sun, I might have problems but there isn't a lot of sun where I live.... I'll look that up later. I like the idea of the purity in the white ones and the peach sounds pretty, too. We had some springlike weather this w.e. I even went to Traverse City where there was still quite a bit of snow on the ground but it was warm enough to walk around outdoors with no jacket and that felt so freeing and so promising. Next week is supposed to be the beginning of spring. I am soooo ready for it. Then in a few more weeks I'll go to LousyAnna and see my daugher there & her 4 children, with the new baby who's a year and a half already. Let me know what you think about the accupuncture. They recommend it at Mayo & I have shoulder & hip & ankle issues & MAJOR TMJD issues, too & the migraines that are barely controlled by the topamax. They've been suggesting qikong & reiki and accupuncture and whatever alternative medecine I'll try. Tomorrow my massage therapist is supposed to tell me about someone to teach me reiki. I know she uses reiki on me, but she's not comfortable teaching it. Now that I've filled half your page, I'll stop & wish you a great week lots of sunshine. Hugs, Rose

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