At the recommendation of ALS Worldwide and with the approval of my beloved neurologist, I have begun an unconventional course of medications. I use the word “unconventional” because some of the medicine is either not typically used in cases of ALS or is being used outside of the FDA approved dosing. Additionally, none of this is covered by insurance. Our hope is that the new protocol will better manage my symptoms and even gain back some of the strength and mobility I have lost.
I began taking quinine sulfate to manage my excruciating muscle cramps. Even though my mouth now constantly tastes of bitter tonic water, it’s worth it because I am getting near total relief.
I am taking Nuedexta three times a day rather than the standard two in order to better control my PseudoBulbar Affect, which causes involuntary fits of laughing and crying. We are seeing good results so far.
Next week, I begin daily injections of B12 into my arms and legs. I am not absorbing the B12 I ingest orally thanks to ALS messing with my blood-brain barrier, so we will be delivering it directly to my muscles. This should restore some of my strength and mobility.
And so it goes. We experiment to manage the untreatable, to keep me going by patching up the tears until I am more rag doll than woman. Still, as long as I am, I will be grateful.