Over the last 2 years, I've had tons of tests completed. Finally now, I don't have any substantial tumors remaining. I also know the cause of my tumour and while it has been hard for my family (finding out you're the cause of this is never nice!) they have taken it very well.
I still have an elevated heart rate and mood swings, this will continue and I have some tremors in my hand. The doctors have suggested to go on some antidepressant drugs to help but instead I focused on physical and mental exercise to deal with all of the above; its working great so far.
Some of the things that occured in the last 2 years included;
- elevated dopamine
- suicidal thoughts
- depression
- fear of mortality
- thoughts of not wanting children because i didn't want to pass this on
These are apparently very common feelings within people who have these tumors and the drugs that are given to deal with dopamine levels. Mixutre of counselling, drugs and a change in lifestyle (excerising more, new friends, healthier diet) helped get through this.
I haven't updated this much and probably won't again but if anyone does want specific information or to have me tell you more detail then please contact me @ dcerreto@hotmail.com
Monday, November 12, 2012
My cause
After much searching and research in to why I had this tumor, I eventually found a geneticist who had worked with these before. They took some blood samples from me, my father and my sister to be sent to a lab to have some genetic testing done.
After 6 months, the results were in and I had an answer.
I had a genetic weakness in the SDHD gene. This has been passed through on my fathers side and therefore all the males on my fathers side of the family had this as well. Most haven't shown symptoms of a mutation; but going back in history it is hard to determine as people were just seen to have strokes and knowledge of these tumours was unknown.
More information on the gene: http://ghr.nlm.nih.gov/gene/SDHD
What does that mean for me now?
Targeted screening and testing. The doctors now MRI certain parts of my body which are known to have these mutations. They also can look for identifiers in my urine collections and behavior. When I have children, I also know what to look for now and that they need to be tested for this.
After 6 months, the results were in and I had an answer.
I had a genetic weakness in the SDHD gene. This has been passed through on my fathers side and therefore all the males on my fathers side of the family had this as well. Most haven't shown symptoms of a mutation; but going back in history it is hard to determine as people were just seen to have strokes and knowledge of these tumours was unknown.
More information on the gene: http://ghr.nlm.nih.gov/gene/SDHD
What does that mean for me now?
Targeted screening and testing. The doctors now MRI certain parts of my body which are known to have these mutations. They also can look for identifiers in my urine collections and behavior. When I have children, I also know what to look for now and that they need to be tested for this.
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