I was making too much noise after everybody went to bed. Fletcher came in to see what was going on. I was watching videos of spasmodic dysphonia. I found a bunch of people that sound like me! It all started when somebody posted a link to the myasthenia gravis organization in Australia. It was telling what percent of MG patients have which symptoms. I have dysarthria. I had it mildly for years before it got worse. I wondered what dysphonia was, so Googled that. Some types of spasmodic dysphonia sound like me! The 4 year old says it sounds like grandma, so it’s not just me. Since there are all sorts of dysarthrias and dysphonias, no regular doc is going to be good at telling them apart. Now I am excited to talk to the neurologist about them. I was surprised to find that some can get get treated.
· 13% had dysarthria (slurring, fatiguing speech)
· 2% had dysphonia (voice disorders)
Heather took the kids and drove around until they conked out. Then she sat in the sunny van and read until they woke up 2 hours later. I took the garbage and recycling out and guess what happened? First my left eye closed, then the left side of my mouth drooped and then it got numb. The guy I was talking to said the same thing my next door neighbor did….it looked like that side of my face wanted to slide off. Sigh…..the whole time my voice got worse as my face got droopier.
With my eye about 3/4ths shut, it was worse than all the way closed. It majorly messed up my vision. I was joking around and cupped my hand over my eye and said I needed a pirate patch. WOW!!!!!! With the drooped eye covered, the double vision stopped AND my voice got somewhat better. I was way easier to understand! That sure was interesting. Perhaps the muscle effort to keep my eye open is using up so much strength that it also contributes to the voice/neck muscle weakness. Truly fascinating. Stupid myasthenia gravis!!!
My miracle cure is Mestinon, rest and cold. Besides those, I get better. With IVIg I just didn’t get this weak to begin with.