Wednesday, 19 September 2007

This post will not be so much about CFS...

I have not been posting for a long time. The reason: I have felt quite bad for all of this summer, not because of the CSF (even if that is part of the problem) but because of another condition I now have as well.

Some years ago, I noticed my hands and feet had grown and I also felt more tired and had a lot of pain everywhere. Yes, you heard right! My feet grew 4 sizes in about a year! It turned out I had a pituitary tumour that was producing growth hormone (GH), so my body in some respects started to grow as if I was in my teens again. Anyway, now two years later, my doctors have tried four different medications to stop this excessive GH production. Unfortunately, all of them have given me such bad side effects I have been forced to stop the treatments.

What I can figure out myself, these terrible side effects is post likely a result of my CFS! I get pain and even cramps in my leg muscles, much more chest pain than usual and also some disturbances in the heart rhythm and some other reactions like totally blocked out in my brain and ability to concentrate, when I take these drugs to curb this particular pituitary tumour. Most of the drugs have interfered with the dopamine system, so it’s a very complex interaction; the endocrine specialists doesn’t know or understand it themselves. It’s only because of my own knowledge and experience in cell biology I have been able to trace down some new findings and get some kind of explanation of why I have reacted this violently on the treatments.

This is not the only other medical problem I have had in the years before. But I might come back to that later some time.

I’m not complaining. I only tell my story to say it is possible to survive even when you suffer a lot constantly. I guess it is because of our intrinsic ability to adapt to what we feel in our bodies, as human beings. The ‘only’ difficulty has been how friends and even family disappear when it gets ruff... instead of staying and supporting. It could happen to anyone! It’s our biological fate.

Anyway, now after two months, I am mostly off all these side effects I have experienced this summer again. On the other hand, what is waiting is for my doctors to decide on surgery of the tumour or not instead. I am waiting for this decision this week. It is really a tiny operation, right through the nose bone and into the part of the brain where the pituitary sits, but it is a delicate procedure. I’ll just have to wait and see.