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...