What is CIDP?

December 1, 2006 at 1:19 pm

I think I know or heard of the this CIDP…Thank you for the reply and yes the onset of GBS came slow from the feet up not lungs or chest. I noticed the first signs when I felt unsteedy on platforms on the trains on anywhere up high… I had no pain at the begining numbness and 4th month or earlier these rubber band feelings around my upper and lower arms…when It had reached to my hands…I could not squeeze a tube of thooth paste.
Fear of heights. [I continue to feel this today]all the doctors at that clinic was give me virtigo pills the stuff you get when you have to go on a boat…for sea sickness?? The Hospital system is so slow. I will explain.
It was hard to relate the symtoms to MD [another problem I should have treatment from a Nuerological Doctor immediatly] at the main hospital I was so tired and weak I never spoke up loudly like I do NOW. I just assumed they were helping me…What a lesson I learned…I did not know what was happening to me complicating factor I believe is because I stated I am a recovering alcoholic????
My opinon they waited too long for blood work..the numerous tests I recieved Spinal Tap,EMG,Cat Scans MRI’s [too many]and I too did that 7 day intraveinous blood thing that was my second stay at Saint Lukes…these procedures where performed at the main Hospital Saint Lukes on or about the 8th month I kept getting worse…that wonderful day the
Head Nuero Doctor at the main Hospital he had me walk up and down a hall on my bare feet heels on my toes with doctors and staff all gazing at me shaking and unable to walk or do any of their commands. The love and care and that sentence… “Do not worry we are going to help you” was all I wanted to hear…I had faith at St lukes Staff not the clinic…I was admitted that evening for 8 weeks…they knew they messed up I could use another way of putting it but I think you understand HEE HEE…by the way…all tests were performed when I was inpatient I could not walk at that stage. My clan of friends helped me make my appointments…yes I am angry I got this rare disease…I am sure that comes through…every two years SSI reveiws my case…SSI tried to take my benefits this is plain cruel. I get so sick and tired of the system…I rather curl up in a ball and sleep or cry. I won my hearing last April.
Much thanks for spending the time to write me…I am intrested in any information you have…sometimes others have an insight looking in from the outside.
The most funny thing out of all this I used to be afraid of needles…I fainted alot when I would just see the white coats setting up the needles it is so funny over here I call them Vampires they do not get offended…just for laughs its not your body when you get treated in hospital yeah right not this smart cookie…Bye…BAD SPELLER