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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-08-2010, 05:02 PM | #1 | ||
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Junior Member
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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.
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02-09-2010, 05:51 AM | #2 | |||
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Member
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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 |
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02-10-2010, 12:46 AM | #3 | ||
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So glad you are feeling better....keep us posted! Sue
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02-10-2010, 03:41 AM | #4 | ||
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Junior Member
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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 !!
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