I'm goimg to give it a shot. But I can assure you my wife will take it away if she sees I'm getting worse. As for my heart luckily it is strong for a 71 year old smoker. My wifes concern is my condition is not improving with any of this "witches brew" I'm taking plus all the IVIG treatments I'm getting. I am currently getting 3 IVIG treatments a week for 8 weeks. My wife wants me off Prednisone she feels it is causing a lot of my problems.
Mike

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.

Mike, if you have a congenital myasthenic syndrome, then maybe the medical histories of your affected relatives will help the doctors figure out some of the details. I know there are all sorts of congenital myasthenic syndromes, and they cause different sorts of malfunctions in the neuromuscular junctions--and each kind of malfunction has its own group of typical symptoms. Maybe if the doctors use clues from your relatives' medical histories as well as clues from your own, they'll be able to narrow it down somewhat.

Does that make sense? For example, if your mother, her two sisters, and your sister all have it, doesn't that make it more likely that this is a dominant trait? If all of you didn't have symptoms until you were older, shouldn't that be a clue? And did all of you have the same symptoms as your first noticeable symptoms? That sort of thing. I hope they are interested in you. I hope they're fascinated by you. They should be.

Give my greetings to your sweet wife (she doesn't know who I am, of course, but I admire her a lot, how she gathers and processes information for you, and keeps on top of everything. It's a very concrete expression of love. That's the kind of wife I want to be).

Abby