It has occurred to me after reading posts in several discussion topics that one of the most helpful things we acro members provide for each other is a reality check of our symptoms. Because acromegaly is such a multi-system, full-body disease, it appears its potential for triggering symptoms is limitless. By the time most of us are diagnosed, we have spent years with problems and treatments in varying degrees of severity. Oftentimes, we sensed that something was wrong, but were either not taken seriously or made to feel like "it was all in our head". (Unfortunately, it was, but we just didn't know where!) Almost all of my symptoms were easily explainable by other causes, and were treated as such- carpal tunnel, sinusitis, etc. Eventually, I just felt like I was destined to always have one health problem after another. I felt I was becoming what we teachers call a "CC"- chronic complainer.
After diagnosis all the pieces come together in our minds, our families' minds, and that of our doctors. The thing is that most doctors are not familiar with many of the more bizarre symptoms that many of us have experienced. In this group we can compare notes and discover that we have experienced a lot of the same things, and that they are probably caused by the acro, too. I've been amused by how many times I've read, "You mean that happened to you, too?" By compiling the things we each learn from our doctors, we gain much more knowledge than we could on our own.
Has anyone talked to their neurosurgeon or endocrinologist about the availability of this or similar support groups? I was just thinking, I wish mine had told me about this one in the beginning. Maybe it would be worth taking the web address to our next appointment.