a belated intro–cidp

    • Anonymous
      July 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…

      thanks, alice

    • Anonymous
      July 26, 2008 at 2:51 pm

      Hang in there. There are some good folks on here with great info on CIDP. They will guide you as you go through treatment. Watch for their posts.

      Take good care of yourself and keep talking to us.

    • Anonymous
      July 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.

      Jim C