varacara,
Big hugs to you! The timing with the holiday's is hard too.
Everyone is different, there is such a wide variance as far as progression, and presentation, that you have every reason to expect it to be slow if you indeed do have a motor neuron disease.
Remember that there is specific wording as far as diagnosis for ALS, there is suspected, then probable, and then definite. So you're being told that ALS is in the running, but maybe not in the forefront of what is causing your problems. I say this because when it came down to this point with me, my doctors did not feel like they needed to do a lumbar puncture or muscle biopsy, that I didn't have symptoms that could be caused by conditions that these tests would reveal.
I found with my kids (who are all grown) that it worked to gradually bring ALS up as a possibility. As it was already obvious that nothing was clear cut, it wasn't that hard to do it in this manner. I know it sounds like it would be, but I grouped it in with other possibilities at first, It made it easier in that for a long (relatively) while all of my problems were bulbar, and they were not progressing fast at all. I think the time span gave them a chance to get more accustomed to the idea, than if I'd waited until everything else had been ruled out. I didn't really plan it this way, its just how it happened.
The swallow study will be very helpful to you, you and your doctors will be able to tell a lot by what it shows, and it is not unpleasant.
I know it isn't something you're ready for. Probably no one is prepared to hear this, even if they think that they are. It still seems preposterous to me much of the time.
Just know that you can always come here and find support.
One more thing about your kids, there is a new ALS website just for kids and teens. It is a sticky at the top of the General Discussion Forum opening page.
Keep us posted!
