You lie on a gurney and the nurse dusts your whole body with a gold powder. You are then placed into a little wooden box that’s rigged with cameras and infrared lights. The idea is to get your temperature up to 100.4 and wherever you sweat the gold powder turns purple, very purple.
After the longest 47 minutes ever, the nurse pulls me out. I was supposed to make it an hour but couldn’t.
I am photographed and then she leaves to go get Michael.
Yea, the look on his face said it all.
I looked like the girl who turns into a blueberry in the movie Charlie and the Chocolate Factory.
That powder was in everything and everywhere.
Days later someone who worked at Mayo would grin and say”sweat test”? Wow!
The last day is complete and we sit with my neurologist, Dr. Jennifer Tracy.
She tells us I have Chronic Inflammatory Demyelinating Polyradiculoneuropathy, CIDP for short.
It is a rare autoimmune disease that causes the Mylar sheath of the nerve to damage itself. The brain cannot get the signal to my feet and hands because the pathway is all pitted and rough, not tubular and smooth.
Like the coating on an electrical wire.
It will continue to the rest of my body.
Once the nerve itself is affected, there is no repair possible.
She had just published a paper on this disease earlier in the year.
She made us a copy to read on the plane home.
In stunned silence we listened to her diagnosis and suggested treatment.
It was concluded I really would not see much improvement and should expect to decline. This is a progressive disease with no cure.
I would most likely never get out of the chair.
She suggested a new treatment plan that was aggressive but promising.
I told her I’d drink gasoline if it made me better.
I would stay on my weekly regimen of IVIG infusions but we would add 1000 mg of CorticoSteroids into the mix.
I would also take oral Chemotherapy called Cyclophosphamide at 250 mg daily.
My hair may or may not fall out.
I would gain weight but this was the cocktail she was advising.
We agreed and headed to the airport to fly home in shock.