Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
It appears we have had several new members in the past couple of months. It makes me curious as to why that is. Are some of the efforts that I know people are making to increase awareness starting to have effect? I'd be interested to know three things from our members:
1) How did you find this web site? (Google search, doctor, friend?)
2) Which professional first picked up on your acro?
3) How many members currently reside in Texas?
1) How did you find this web site? (Google search, doctor, friend?)
2) Which professional first picked up on your acro?
3) How many members currently reside in Texas?
2. Family lunch. An uncle endocrinologist who didn't see me for 3 years immediatly noticed the changes in face and voice. He wrote on a paper "acromegaly, IGF-1 test". The test confirmed his diagnostic.
3. France
2. Internal Specialist
3. Calgary, AB, Canada (but I messed with Texas)
2. Endo/Neuro officially "diagnosed" after doing the blood tests, but I already knew based on my own research.
3. Toronto, Ontario, Canada.
GP sent me to ophthalmologist because of changes in migraines - he almost blew me off - he'd been seeing me for years for them. Ophthalmologist sent me to neurologist.
Meanwhile GP ordered MRI.
Radiologist said it was NORMAL.
Neurologist is MY HERO, he found the tumor on the "normal" MRI & ordered more MRIs to focus on the pituitary gland plus he sent me to a neurosurgeon & an endocrinologist.
The endocrinologist ordered labwork which confirmed the acromegaly.
This whole process took several months. It was a few more months yet before I had surgery.
I currently live in Michigan, where there are at least 2 other people within driving distance of me who have acro, but I have yet to meet them. I have met 10 other people so far & there is something very powerful & special about creating a bond with someone who is fighting this & truly understands & often can give advice & insight. Actually, the neurosurgeon told me of a 3rd other person from my area, but he has down's syndrome so I don't know about getting together with him, but I think his mother, who diagnosed him herself, then took him to the neurologist, might appreciate the support of contact with others who are facing this.
2. Indo
3. California
2. neuro did MRI, found tumor, endo confirmed acro
3. Tennessee
#2 I talked my primary care physician into running tests after a year of complaints
# I reside in Arizona with my two children
2. Self diagnosed, seeing specialist next week for testing
3. London, Ontario, Canada
I found this site through google search.
My acromegaly was picked up by a young locum doctor, after I went in for tonsillitis! She picked up on the fact that I had an enlarged tongue, as she couldn't see my tonsils. I had been back and forth to the doctors over the last 12 years with all of the classic symptoms, extreme fatigue, mood swings, headaches, loss of libido, constipation etc. But was always told that these were classic signs of depression and sent home with antidepressants (which never agreed with me!)
Doctors should be made much more aware of the signs to look out for, as it's really not as rare as people think and the number of cases are on the increase.
I live in Exmouth, Devon in the U.K and I am currently on a medical trial at Derriford Hospital in Plymouth.
2) Primary care (internal medicine) doctor ordered the tests after an orthognathic surgeon suspected acro.
3) Minnesota
Endo
California
2) Self Diagnosis
3) I live in South Carolina
1. PCH Search
2. Orthopaedist - noticed new bone growth over old scar tissue back in 1993 after a lifting accident. I am forever in his debt.
3. Poughkeepsie, NY
My chiropractor thought my hands, feet, nose and tongue had grown since I had last seen him. He sent me for MRI and then endo confirmed it.
Reside in South Dakota
1) Other Acro friends I have met through various Acro sites, pages and blogs
2) My wonderful GP. I had been on holiday and he had noticed changes in my appearance
3) NSW, Australia