Wednesday, 14 January 2009


…I have not been writing for a long time. Some time ago, my father died after a short illness. He was 84, so I guess it was not completely unexpected, still difficult. However, around Christmas, I noticed that I anyhow had managed all that had happened around his illness, death and funeral surprisingly well – physically speaking. This betterment has continued now during January too, so maybe the extra weakness and pain from the hormone imbalances and pituitary surgery last spring finally is going away.

I also now know that the MR brain scan in September showed a ‘clean’ pituitary! They didn’t see any residual tumour tissue on those pictures. Of course, in the end, there could be some few cells left, that slowly will continue to grow again, but for now everything looks fine.

In the autumn, I was also referred to a new specialist, specialising in neuro-muscular diseases and genetic mitochondrial conditions that now are known from DNA sequencing investigations. I spent almost two hours going through my whole story, from 25 years ago until now, with him. Well, really my whole life story –medically speaking. He even asked about if I had noticed something already as a kid and when growing up. The result of this interview/discussion with him was that he was going to take some time and think about my condition and story, and if he could figure out something, he would come back. This was in early October.

Well, now last week, I got an appointment for taking muscle biopsies. Exactly what he is going to check I don’t know, and I really don’t expect anything new to come out of this. But of course, it is good that someone is testing something new about CFS. Maybe there is something wrong with the energy producers in the muscle fibres – the mitochondria’s.

I will have another, completely different test done too. My father died of a ruptured aortic aneurysm, and when I told my cardiologist about this at the yearly ultrasound check-up of my heart, he immediately referred me to the vessel specialists here at the hospital. The condition is much more common in male siblings of known patients, and furthermore they started general screenings of all men at 65 years here in Uppsala some two years ago. So the knowledge is present here. I only hope it has nothing to do with my known brain aneurysm, or the hiatal hernia I have had for a long time now. It could be a generalized weakening of smooth muscle cells in these structures, but it could also be specialised disruptions at each site causing the different bulginess. No one knows the exact reason for aneurysms or hernias.