I just read through the info but am confused. Is Vyvgart a type of targeted IVIG or is it a different type of medication/ treatment?
It is cost prohibitive (like IVIG) so people who qualify would have to get it covered by insurance or get it as part of a research study.
I apologize if I missed this when we were chatting earlier but did the nerve conduction study show a specific abnormality? I was just curious in comparison to mine. My EMG & nerve conduction tests (back in 2015) were not done properly and the abnormality that they showed was that one of my phrenic nerves to my diaphragm was only working at around 50% (at that time).
Dr Chemali (POTS neurologist in Norfolk) did an EMG test on me back in 2016. He placed the needle in several muscles and asked me to flex them. He also did some nerve conduction tests too, but not nearly like my most recent neurologist did.
My most recent neurologist had me do some exercises with my hand that was never done before, and there was another segment of the test where a funny looking electrode was placed on my forearm while others were on my hand. The machine was turned up to 20hz (painful) and after doing it 4 times, the doctors said he didn't need to see any more. He also did the same things Dr Chemali previously did.
One POTS patient on Fb pointed out in one of Dr Chemali's recent seminars, he said LEMS patients can present as having dysautonomia when it's actually LEMS as the root cause.
