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, August 17, 2007
I was feeling okay until this afternoon. Started to get sharp throbbing pains in my right leg. Mostly the knee & thigh area.
Thursday, August 16, 2007
My arm hurts and whatever this is, it’s getting worse. If I make a fist with my left hand, pain shoots up my forearm.
It’s not weather related. Today’s forecast is for 101 degrees – this isn’t counting the heat index.
Wednesday, August 15, 2007
Labs are back – what’s up with Dr. Schecter’s office? They want to charge me $10.00 for my own lab report. I called Ken and he faxed them to me for free.
The good news is that I don’t have Lupus and the issue with my left arm is carpel tunnel.
Friday, August 03, 2007
Been off-line for awhile and trying to get back in the habit of posting. Things are sooo crazy at my job. My supervisor had a stroke and I’m basically working our department alone.
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.
