11.12 Myasthenia gravis. With:

A. Significant difficulty with speaking, swallowing, or breathing while on prescribed therapy; or

B. Significant motor weakness of muscles of extremities on repetitive activity against resistance while on prescribed therapy.

This is what I've got -- and the SS qualifying "code". I met the "A" guideline. When in exacerbation, I would qualify for "B", too.

It is the same thing that Aristotle Onassis had -- and, yes, it is life-long. But, it usually doesn't kill us -- and it usually doesn't hurt.

Lots of people with ALS are misdiagnosed with Myasthenia at first -- our symptoms are so similar -- and a few with Myasthenia are misdiagnosed with ALS. ALS, of course, is progressive -- Myasthenia usually reaches a certain point and then stops. Myasthenics are better in the morning and worse later in the day. ALS patients just get worse and worse until they usually die.

Now that I HAVE SSDI, I have NO complaints -- this is a disorder that I can live with -- not nearly as life-altering/life-threatening as so many. I feel blessed in many, many ways. True, I cannot work -- but, if I am careful NOT to overwork my muscles, I don't HURT. I can't breathe well, but, I have learned how to cope with it. I sound like a drunk or stroke victim when I talk -- so, I mainly write by hand or use the computer. A speech therapist taught me how to swallow when I am having a hard time. So, overall, things are good compared to so many other people who are disabled!

I cannot stress enough that GETTING disability changes your perspective a LOT!! That is one of the reasons I spend a lot of time in this forum. When I got denied the first time, I was devastated -- sitting at the bottom of a deep dark hole. I didn't know what to do -- where to turn -- the world was spinning out of control. When I finally gathered my wits, started contacted my legislators, got a speech evaluation, got a GOOD LAWYER -- and won my appeal in three months -- I got my life back. Now, I feel like I need to "hold the hands" of others who are in similar situations. Unless you have been there, it is hard to describe how awful that place feels.

Legal, thank YOU for taking so much of your time to help everyone with their awful struggles. You may never know what a difference you have made in someone's life.