An update
 

Hi Everyone, Just checking in to say I am feeling great on Salbutamol. Dr rxed me the syrup abt 3 weeks ago and I started slowly and am now at 6mg a day. I don't think I have sleep apnoea anymore. Not that I am aware of anyway . Previously I was waking up with chokes .. so think this is significient ? The waking up with chokes was a symptom that happened in the months AFTER my CPAP test and while I was still seeing about CPAP. That Dr discharged me in Sept as I could not manage the machine ( it choked me and I had no strength to breath OUT ). So ... the chokes were a new symptom after Sept but I had not been back to Dr re it... Now they are gone :) And I wake every morning feeling as though I have had a good night's sleep :) I even can manage with slightly less cortisone now. Dr has a DOK7 gene test happening for me - don't have results yet but as my response to salbutamol has been so good - we suspect it is a type of CMS that I have. I hope I can get proof of this as no one will believe me otherwise ( except my good Dr) and will just call salbutamol a placebo effect. Hope everyone is well and doing OK. :)

first, I am really glad to hear that you are doing better.

second, it may or may not be DOK7. it may or may not be myasthenia. it is definitely a neuromuscular disease, that responds to salbutemol.

why think that it is placebo, any more then the response of a diabetic to insulin?

hope you keep feeling good,

alice

So glad you are feeling better....keep us posted! Sue

Yes. So far ..so good. Strange things are happening ...like improved walking. I was not even aware that I was walking 'slow' but now I can walk 'fast' and 'fast' immediately - I can feel the difference. Arm strength is improved as well. I hope it lasts !!