It's life Jim......but not as we knew it!!

A few years ago after a period of undefined illness, I was diagnosed as having a rare condition called Acromegaly. In retrospect, I can now see all of the symptoms pointing to Acromegaly; claustrophobia, painful hands and arms, excessive sweating, headaches, tunnel vision, increasing shoe size and many other little things that were making life difficult for me. I know now that this condition, tumour, had been growing in the centre of my head for around ten years before diagnosis. And even then the diagnosis was an accident!

Around six years prior to that "accident", I was having a collection of cysts examined by ultrasound at Arbroath infirmary. The young doctor carrying out the examination was - in hindsight - asking all the right questions. He knew, or at the very least suspected, that I had Acromegaly or another related problem.

That information was, as far as I am aware, never passed on to either the specialist in Arbroath or to my GP. The specialist should have been able to spot it for himself, my GP probably not. My GP in fact did not have a clue and for several years he allowed his bigoted and arrogant nature to brand me as something of a hypochondriac. At one point, when my head felt like it was exploding, he basically told me that I probably had toothache, should go and see a dentist and stop bothering him.

If I sound a little bitter here it is because I am. I have since met second year medical students who could diagnose Acromegaly by listening to my voice and looking at my face, as the young doctor had in Arbroath more than ten years ago.

In the end it was not even my own doctor who referred me to the orthopedic specialist who finally recognised that there was indeed a problem. It's bad news when you have to sneak behind your own doctor's back but it proved to be wisest choice I made.
I had been complaining about the pains and swelling in my hands since 1988. I finally got a referral in Nov 1997. That doctor sent me to see a vascular specialist at Ninewells in Dundee and she spotted Acromegaly the minute I walked through the door

And so we come to the reasoning behind the production of these pages. In the two years following my diagnosis and subsequent Pituitary removal, I was lost. I did not know what was going on or how to deal with the loss of my hormone regulator. Eventually I discovered the internet and it all began to become a little clearer as I sought out information from around the globe.

One thing that struck me though, was the lack of personal insight. There was lots of info on Gh levels and optimum drug therapies but very little about how that actually feels or what it's going to feel like in ten years time when the radiotherapy has run it's course.

Basically this is the scrapbook diary and information portal of a man with Acromegaly. I hope that it helps somewhere down the line. I also hope that this can become a place where other sufferers can have their iown thoughts and feelings published. We want to hear from anyone with pituitary conditions. Tell your story here. Let the world know how you feel.  « Contact us »

We also have a self help Forum that is dedicated to just about anything you fancy. If you have any questions or comments to make then please use the forum for this. That way everyone can benefit from any information to be gained.

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