ALS Clinic - Part II

The speech therapist gave us a state agency that sometimes has the speaking software in stock that they would give to us for use at home. He said if they don't have it to give, we can order it discounted through them for about $100 (retail is about $250-$300).
The PT said my right hand is starting to curl up in a fist; there is name for this but I can't remember what it's called. So, I'm supposed to keep my hand open and fingers/palm flat whenever I'm resting my hand, even though it's more comfortable keeping it balled up in a loose fist. I may get to a point where I need to wear a splint on it to keep my fingers from curling up, but hopefully that won't be any time soon.
My oxygen looks good! At my first clinic my oxygen intake was 84% compared to expected (not a big deal, it would only be a big deal if it went down), the 2nd time was 82%, and this time it was 85% - my best one yet! :-)
We met with my dr. last and he tested my reflexes again. Thus far my reflexes have been normal, which is what has kept me from an official ALS diagnosis. Well, he saw some change in my reflexes, but not to the extent you would expect with my degree of muscle loss. He wants to try me on the medication they would have prescribed had my spinal tap shown inflammation or infection. The medication runs $20-$30k for a two month supply so he has to make a strong case with insurance. He wants to do another EMG (he hasn't done one on me before) to see if he can pick up anything in the EMG that he can use to make a case to the insurance company. He said the medication would be safe during pregnancy now that I'm out of my 1st trimester. He said the alternative would be to wait two more months to see if my reflexes change more, but who knows what other muscle loss and ability I will lose in two months. So, I will be going for another EMG in the next couple of weeks. Although we're hopeful, we're not holding our breath.

After experiencing our first clinic w/Dr. Levine and his team we are definitely switching doctors. The whole experience was so much more helpful and upbeat. Instead of us asking questions and for help, they directed us on what we need and where to get it. They were all so upbeat and positive, they just put me at ease. I especially liked the PT and OT; they were great (even if Bob thought they were a little hokey)!

Well, I think that's all of the major highlights from clinic. I won't go again for three months unless I need to be seen earlier than that.