How do I count the ways?
Oh, yeah, the neurology appointment with new neuro doc. Turns out I am in absolutely perfect health except for my right side. Apparently I have a beautiful brain, a lovely spine, and I'm in great shape. All of which was horrible news unfortunately. Very brisk reflexes on the right side, Babinski positive, clonus present, muscle in right calf diminished. (Atrophied.)
All in all, a new EMG is scheduled for next Monday morning and ALS is now on the short list of possibilities and pretty much now the most likely. Sigh.
I am going to be brutally honest, this sucks. My fortieth birthday was in January. My baby is two. Two! My first grand baby will be here in April. And somehow we are going to have to sort through what comes next. Our homeschool program (very, very large) has lost two moms in two years. I would have preferred not to be next.
On the upside, because, it turns out I am shockingly skilled at dark sarcasm, I could get a really cool joystick to drive my van for a while.
Feeling pretty horrible for my poor husband right now. He really had refused to entertain the thought of ALS.
I think my neuro is a lovely man. He might be a little pessimistic. I had a CLEAN EMG on Monday. Clean. 100% Normal.
So he tells me this fiasco could be early ALS but there is NO motor neuron damage (denervation) or compensation (reinervation) found. Which, IMO and Dr. Google's, makes that little assumption very unlikely. My doctor says he has seen it happen before but it's rare, maybe PLS.
Frankly, I am thinking Lyme. Lyme has been misdiagnosed as ALS before and my thoughts are if I look like a jackass and I'm totally wrong and it *is* ALS, so what?
And seriously - if I had ALS I would be the 1 in 165 million to get it before forty. Then I have a slow moving form? Even more rare? AND I have two clean EMGs? That would make those stats so off the chart rare. I refuse to drink the kool-aid. Or at least not until it's being poured down my throat.
So the update?
1. I have a clean EMG.
2. I (currently) do NOT have a diagnosis.
3. I have an appointment with a Lyme doc in Wisconsin in early April. Yes, yes, I do. (dance)
All I want for Christmas is Ceftriaxone and it is looking like an April Christmas.