CIDP since december 2007, new to posting

Anonymous
July 25, 2008 at 4:11 pm

hello everyone–

i’m alice– 42 yrs old, and a police officer in san francisco. i have been off work due to my condition since around february…

let’s see– in dec 07, after a stressful period and a bout of shingles, i began to feel numbness in my toes and finger tips– it progressed in a week or two until i felt numbess on the bottoms of my feet. then i got a flu– right around the new year– and i thought i was dying…

i saw my gp right away who set up a referrel with a neuro– i saw him eary january. he ordered up a million tests: mri, chest x-ray, blood work ups for everything, nerve velocity test (fun)– he believed i had cidp and refferred me to dr. jonathon katz– he is a specialist in neuro-muscular stuff.

katz agreed: cidp it is. we took a conservative approach together– no treatment, only pain management– he believed (hoped) i would get better on my own…

as the months passed, i slowly progressed– numb legs, buttocks, hands and wrists– lots of pain– imbalance, etc…

neurontin did nothing for me except made me dumb 😉
he then suggested cymbalta to help with pain and mood– as he thought the illness was affecting my state of mind… it helped at 1st, a lot… then wore off. i weaned myself off it about week ago… i think i am having withdrawal symptoms from ceasing cymbalta but am unsure due to having begun ivig– don’t know if what i feel is one or the other– my pain level, now is excruciating– it (my pain) and my inability to walk are the worst parts for me…

so– currently, i am doing ivig– i did the 5 days last week and will have 2 treatments a month for 4 months– and then i guess my doc and i will take a look at its efficacy…

i am open to any info and would like to be in touch with others with CIDP–

alice