Brief look into my life since having Chronic Inflammatory Demyelinating Polyneuropathy or CIDP, a rare neurological disorder that affects about 1 in every 100,000 persons (US figures), which means not many people know much about it, including most doctors.
Friday, July 06, 2007
Back at home. Damn it’s hot!! My cycle decided to show up for a brief visit. Not enough time to get that biopsy schedule and done.
Oh well.
Tuesday, July 03, 2007
Went to Bush Gardens today with the cousins. There are sooo many hills in this place.
Most parks level things out (somewhat anyway), but here it’s supposed to add to that “old world charm”.
My legs are going to be sore tonight.
Monday, July 02, 2007
In Williamsburg, VA.
Nana’s service was today. It was very nice. We left right after the repast.
Sunday, July 01, 2007
I went shopping with Kim yesterday. That’s right, me in a mall.
She has a good eye for clothes and picked out a very nice outfit for me to wear at the service and I’ll be able to wear it to work etc as well.
December 2004-toes where numb and tingling. January 2005, numbness spread from a few toes to the rest of my feet and it became painful for me to walk. also the soles of my feet turned purple. February 2005-contacted an Endocrinologist, who referred me to a neurologist. By the time I saw a neurologist in March 2005, my range of motion was affected. I was no longer able to fully bend down, lift my legs, cross my legs. Nor could I fully lift my arms. My balance was off, (I walked like I was drunk all the time), I’d already fallen a few times, the numbness, tingling and pain had spread to my legs, arms, hands and fingers. The nighttime leg pains are the worst. On a scale of 1-10, they run anywhere from 7-10. After a full neurological exam, I was sent for a Nerve Conduction Test to determine the extent of the nerve damage and to also determine a possible cause for the damage itself. The diagnosis was an autoimmune disorder by the name of Chronic Inflammatory Demyelinating Polyneuropathy. The long name basically means that the protective coating surrounding a persons nerve has/is deteriorated. My Treatments are IVIG which are EXTREMELY expensive ($14,000+ per dose) and hard to get.
