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.



Mark Dykeman said...

I hope that things are going well for you!

jen said...

Hi I too was diagnosed with CFS for 20 years and turned out to have agromegaly. I believe that I have an immune dysfunction and agromegaly at the same time. I don't have agromegaly any more because the operation worked for me. You should have felt better after the operation so you must have CFS also. Have you ever tried or considered taking interferon. I know that some scientists believe CFS is caused by the abscence of interferon in the antiviral pathway. I believe that interferon kept me alive long enough to find out that I had agromegaly. The dosage is small-300,000 units by shot once every four weeks. Also, have you tried iv immuneglobulin? Don't give up. JenJenz

ZenMaster said...

Hi Jen, thanks for the information!
No, I have never tried interferon or immuneglobulin treatment. I don't remember if it has been discussed sometime. But some virologists have been involved a long time ago, and looked for coxackievirus, if I would have that as an underlying cause. I had been exposed to many different strains of coxackie at the lab where I worked at the time when I first fell ill. They never found anything definite, but they should have thought about interferone treatment. But this was a long time ago.
Yes, I definitely should have felt better after the agromegaly operation, because my hormone levels almost immediately went back to normal, and are still perfect.
I will soon try to write a new post about the latest test they are doing right now, but I have not had the energy for some time.
I am still extremely tired and weak in my muscles all over. Especially in my calves muscles I even get cramps regularly. So I am in a bad period still.

But again, thanks for the information!


jen said...

Hi Zenmaster. Please pursue the interferon or intravenous immuneglobulin with your Doctor. I would search out a physician that will try this with you. I had to go from Dr. to Dr. and plead my case. I know it is hard when someone tells you try this and that. I got so frustrated listening to people telling me everything in the world, but they didn't have CFS. I did, and I was pretty mu ch bedridden for twenty years. I won't kill you to try interferon for three monhts and if it helps you, then you can continue to take it. I gave myself the injections. Please pursue it as hard as you can. I know you don't have the energy, but do it anyway. Jen