Update 4/15/2011 Interesting Neurologist Visit today

April 16, 2011 at 12:17 am

I had my 4 month check up today. My neurologist was so encouraging and pleased with my muscle tone recovery. I have made a remarkable come back, but continue to battle CIDP. I had a PE this afternoon (4 weeks since my last one). The inflammation in my toes, fingers and lips is still cyclical. The motor function in my right leg and right arm still suffers some in between PE cycles, but not significantly.

His response to the two questions I had for him was surprising. The two questions were: Sometimes along with the inflammation (burning) in my toes and fingers I have a headache; also the strange smell of sulfur or “something hot” happens also. He said that indicates I probably have central nervous system involvement too; some myelin involvement in the brain (similar to MS). Very rare, but not unprecedented. (How unlucky can a fella be??? Extremely rare disease and a rare variation to boot!)

Just wanted to pass this along for the Foundation Forum documentation. He said that maybe someday they’ll figure this disease out …

Keep praying someday is soon … Gary

PS apologies for not visiting more often … teaching a Sunday School class and participating in CBS Bible study leadership … working 10+ hours a day (I’m on a 4X10) schedule … alright I know excuses excuses. I’ll try to be more faithful to y’all. 😮