New Member (not yet diagnosed)
May 17, 2009 2:33pm
I am new to the group but I have been reading posts here for awhile.I am a 55 yr old female and I have been having symptoms for years and my doctors …
wkmc
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About Me
wkmc
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About Me
I am a 55 yr old mother of 3,all grown.Im single and I am disabled so I no longer work.I have alpha-1 antitripsyn deficiency so I have lung desease.I have worked hard all my life so it has been hard staying home.My youngest son is graduating and going off to college so I am about to be alone for the first time.It will probably be nice sometimes but it is also kind of scary.
I am a 55 yr old mother of 3,all grown.Im single and I am disabled so I no longer work.I have alpha-1 antitripsyn deficiency so I have lung desease.I have worked hard all my life so it has been hard staying home.My youngest son is graduating and going off to college so I am about to be alone for the first time.It will probably be nice sometimes but it is also kind of scary.
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For an endo check out Richard Auchus at UTSW.He's at the main UTSW site on Harry Hines Blvd. He was Phi Beta Kappa at MIT in molecular bio I think. Very smart, but very personable. Is involved in drug testing for a new acro drug. Then for a neurosurgeon check out Bruce Mickey, also at UTSW. You can look both up on the UTSW web page. I can't say enough about Mickey, but I have been told he is one of the top two in the state. We've decided that it is well worth the trouble to go to Dallas (about 1 1/2 hr.). All your records are on-line, so all your doctors have access to all your results, etc. If you have any complex illnesses that can be a huge help. They even have a "My Chart" feature in which you can access your test results within hours on line. You need to at least find an endo who really knows acro and who is very patient to take you seriously. This is a no-holds-barred illness, and if you have it, you need someone you really trust. Let me know what you think.
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I don't think so, but I would not trust him just telling you if you have not seen the actual report. I'm sorry to cast suspicion, but I have begun to discover that many doctors to not know much about this disease and even had my own GP tell me there is no such thing as IGF-1 !!!! You should request a copy of the lab report and develop a habit of doing so and keeping copies of all your files, especially since you are struggling with multiple issues. hGH is not stable and can be an unreliable measure, but I've read and heard that IGF-1 is a pretty reliable measure. You might consider seeking a second opinion, especially from an endocrinologist, if your doctor is not able to show you lab reports that prove that you have IGF-1 in the normal range and you might consider it in any case to try to learn what is going on with you. I hope you can find some answers.
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Welcome to our group. Is your doctor running tests to rule out acro? If not are you looking for someone who will? Best wishes & here's a welcome hug for you. Rose
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I have lung disease which is caused from alpha-1 antitripsyn deficiency,but I also have other health problems that doctors cant figure out.I have not been diagnosed with acro but I have most of the symptoms and I would like to be able to talk with people who know the disease because the doctors sure dont.When I mentioned it to my doctor he looked at me like I was crazy.I have been suffering with these symptoms for ten years and am ready for some answers.
