Reply To: CIDP and facial/mouth numbness
Thank you folks for the feedback so far.
Mike, my story is extremely similar to yours.
I was tested for Lyme 6-times actually. Living in California Lyme is not common but I had a target rash a few months previous that was exactly like the Lyme target rash. One of the doctors I saw (non-neuro) was a Lyme specialist and said he was doubtful I had Lyme. Also my neuro at Cedar’s said no Lyme.
I also have had extensive testing of course. My proteins came back way off using the lumbar puncture. Also my reflexes are all but non existent, especially in my knees.
On a funny note, I gave one of my neuro doctors a small 5-pound sledge mallet with the words “GBS-CIDP Reflex Hammer” written on it. We all got a good laugh out of it.
This disease can wear on a person. But we’re a tough crowd!