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About Me
tennisusan
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About Me
57 years old; diagnosed 1 and a 1/2 years ago. Large, invasive tumor is inoperable.
57 years old; diagnosed 1 and a 1/2 years ago. Large, invasive tumor is inoperable.
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Recent Activity
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Journal
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Hugbook
Flower
Happy Easter, Happy Spring!
Hug
Thank you so much Susan!
Hug
Thanks Susan, it's so good to know there's people out there understanding your ups and downs. x
Hug
thank you for your hug. i have been so busy lately i havent really been able to catch up on the new ppl joining but will be today. i think its important to try and get know everyone, not leave anyone out. you never know how they could help yourself or have something in common to chat about and give each other encouragement/support. i have done a little vid on youtube that has been so gratefully recieved here and thats what gave me the confidance to do it. veryone here is so lovely we have a few that want more info than support but thats there way of dealing with acro i suppose.
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Flower
Thank you so much, yes I wish she would come on here, shes only 28yrs old, and I think she is so fed up with it all to come onto a site would only make her worse at the moment, she hasnt much strengh, somedays she barely gets through the day, but hopfully she will later on down the line, I try and learn as much as possible for her, thank you so much for your post, it was kind of you. take care
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Photos
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Support Groups
Close Acromegaly
I was finally diagnosed in 7/07. Had many symptoms for about 12 yrs.- fluke that the asist. to the alternative treatment for sleep apnea first mentioned I may have this! My MD of 15 yrs. had only seen 1 case, back in medical school.... Luckily, I have insurance that is covering the treatment, which seems to be working. Mine is inoperable.
Treatments
- Octreotide Working / Worked
- Intially, I went for 2nd and 3rd opinions- hoping I'd hear that a simple surgery would cure me. I tried various medications and finally I'm responding to a combination of Octretide and Bromcriptine, such that my IGF-1 is within normal range. Now I've come full circle, however, with regard to surgery. It may well be that those with "successful" surgeries drop out of these support groups & seminars; however, I'm no longer shocked by hearing others say in retrospect, that they regret surgery.
- Parlodel Working / Worked
- I started with only 14 of 1 pill gradually went to the current dose 2 pills twice a day. No longer have any side effects from them.
