Quote:
Originally Posted by xanadu
Thanks Nicky, There is so much about this disease that we have to carry with us. The lack of understanding and cruel taunts are something I just grew up with - never realising that there may be a reason. My Grade 1 teacher called me a special child and I believe we are all special - for the way we cope and continue and carry on with this invisible 'foe' with us.
Would you believe that Day 3 into using salbutamol inhalors and I feel a little better ? I have more energy and deep refreshing sleep and am waking up like a new person each day. I have no idea if this is a placebo effect or a sign of CMS but I don't care !  For years Drs have put me on and off salbutamol and I am only starting to wonder if this actually MEANS something
Now to the next stage ... finding some Dr that believes in me enough to order a genetic test...
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glad that you are feeling better, what ever the reason is...
what you need to find is a Dr. that believe in you enough...
the genetic testing may or may not be fruitful, as even when there is clear evidence for CMS, they are not always able to find the gene responsible for it.
but you doctor, should be ready to be your partner and try to find the best managment options, even if he/she doesn't have "objective" evidence. trust you and what you tell him, more then his books. think about you and not about how to best cover his *****.
hope you find one soon...
alice