Posted by Sonia on October 27, 2010 at 16:53:58:
In Reply to: Re: What a week ! posted by Lib on October 25, 2010 at 04:39:41:
: : Personally I would be wanting a proper diagnosis so the treatment could be aimed for exactly what I had... (just me anyway)
: : It's all well and good to treat the symptoms, but to get a proper diagnosis could mean the treatment plan could be better, with potentially less hospitalisations and less days off, less fatigue etc etc
: : so if given the option I would take it...
: : Tracy
: At this point,except for the one mutation that they just started being able to treat for, we all are being treated for our symptoms. The mutation we have does not effect out treatment. It is based on presentation and our treatment teams past experence. So as much as I may be interested in knowing I have a double copy of Delta F 508 that does not have any bearing on my treatment. So at some point it may be helpful but right now for the vast majority of us it means very little.
Its all good, I am sending blood off to the states in a few weeks with my specialist here to get a result in weeks. Otherwise the genetic specialist says here it will take over 9 months to do the entire gene ! I still have to pay the same amount so may as well do all 1800 mutations and get some answers.