Here I am at Long’s Peak Hospital getting an IVIG infusion therapy for Myasthenia Gravis.
I was diagnosed about a month ago after noticing odd symptoms like droopy eyelids and trouble enunciating. A definitive blood test exists, so my doctor had it done and it was immediately obvious that I had the abnormal antibodies that are the hallmark sign of the disease.
It’s incredibly frustrating – MG is incredibly rare these days – 1:100,000 odds of getting it… and I got it. Talk about lousy luck.
There’s a couple of treatment routes – one is Mestinon, a thoroughly nasty drug that keeps your body from breaking down it’s un-needed acetylcholine, thus raising the overall level to offset the interference from the anomalous antibodies MG creates.
It also hyper-stimulates the smooth muscles in the GI tract: read – Diarrhea, cramps and major discomfort – but you can talk and breathe. Kind of shitty trade-off I think.
In my case, the Mestinon stopped being effective almost immediately and the next logical treatment is to do an IVIG – intravenous immunoglobulin infusion. This procedure, done in four-hour treatments over a five-day period, wipes out all the existing antibodies and ‘resets’ the immune system. I just had my first treatment and there were virtually no side effects. My breathing is no longer labored but my speech is still impaired. I’m told that by the third treatment major improvements should be seen. Here’s hoping.
My beloved wife Tammi is worried sick and that is the hardest part of this to take.
I’m already tired of being poked, prodded, jabbed, swabbed, tested, infused, etc.
I just want this to go the hell away so I can go home.