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Member
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Join Date: Sep 2009
Posts: 884
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Member
Join Date: Sep 2009
Posts: 884
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Mike,
First, thanks for answering my question.
MG (or rather myasthenic syndrome) is a very complex illness and can probably be caused by many genetic mutations, various antibodies and possibly a combination of them.
Like Annie said, in CMS they still do not know all the possible mutations, and they probably don't yet know all the antibodies either. There is late onset CMS (although the oldest I have heard of was 50), but there is also familial autoimmune MG. There is also at least one case report describing two sisters with both (CMS and autoimmune MG).
It sounds like the neurologist who saw you is very knowledgeable and experienced (I have met very few who know that albuterol is a very effective treatment in some patients with MG).
But, like Annie said, sometimes those physicians have a very large and over-developed ego, which is not a beneficial trait for a physician.
There are obviously some risks with albuterol (mostly at age 70), and you do need to watch your blood pressure, heart rate, and also levels of potassium, but compared to other treatment options in MG it is probably relatively safe.
I am younger than you and never smoked in my life, but have been taking it for the last 2 years (in my case in led to significant improvement and enabled me to go back to work part-time), without any significant side-effects. (it does make me a bit more nervous than my normal self, but nothing more than that).
The good thing about it is that the effect is noticeable within days.
Although you still have the fluctuations of the illness, and the more severe exacerbations, you find yourself suddenly being able to do on your good days what you couldn't for a very long time. For instance: my niece was a year old when I started taking albuterol. Since the day she was born, I couldn't hold her even for a very short while - if she was just put on my lap, within seconds I wouldn't be able to breath and be unable to move my arms or legs. She obviously didn't become less heavy, but I suddenly could not only have her sit in my lap, but also hold a book and read a story to her for a few minutes. I still remember that day, which was one of the happiest days in my life.
I agree with your wife that Prednisone is definitely something you want to get of, mostly if it is not leading to any significant improvement.
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