a belated intro–cidp
AnonymousJuly 26, 2008 at 2:14 pm
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 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 now taking vicodin as needed for pain– it’s all that works now…
AnonymousJuly 26, 2008 at 3:48 pm
I think the IVIg treatment is a step in the right direction. It should help to counter the attack on your nerves so they can begin to heal. I’m also on cymbalta. I have seen several posts that the effectiveness does wear off with time. Right now is seems to keeping the pain in check. I have also heard that cymbalta withdrawal can be very unpleasant. I hope you are doing that under a doctor’s control. Otherwise it can be a very bumpy ride.
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