Will I ever be better?

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    • #116406
      robing
      Participant

      I was diagnosed with CIDP April of 2016. I began the loading dose of IVIG also in April of 2016, I then went to once per week for a year, then every other week for 9 months or so. My doctor tried to space it out to every 5 weeks and weakness, falls came back. I am now on every three weeks, I can tell when it’s wearing off as the pain worsens. I was on gabapentin but the side effects I had were worse than dealing with the pain. I’ve tried cynbalta and other pain meds that off the top of my head I can’t remember. I guess my question is does anyone ever get back to their old self, totally? I used to walk 15 miles a day (I worked in a warehouse) I also used to lift 20-30 pounds all day long. Now I need two hands to lift a gallon of milk and my arms still shake. Guess I’m just looking for a happy ending.

    • #116412
      Mark Robichek
      Participant

      I’d like to offer you a little bit of hope. I was misdiagnosed with GBS in September, 2016, but when symptoms returned in March, 2018, I sought out a better doctor, and he confirmed that I really had/have CIDP. I was put on a regimen of Prednisone and IVIG in July, 2018 and by November, 2018, I was pretty much back to normal (whatever that is!). In January, 2019, I switched from IVIG to SCIG, mainly so that I could travel if I wanted to without worrying about getting IVs everywhere. I’ve been slowly backing off of the Prednisone, and everything is still hunky dory; my symptoms have not returned.

      If you’re not improving at all, you might want to seek out a doctor who specializes in GBS/CIDP. For me, it made all the difference. Good luck!

    • #117583
      Peanut-WI
      Participant

      I’m with you. I was diagnosed in April, 2018 and still need a walker around the house and a wheelchair when I go anywhere. I think everyone is so different and they don’t have the answers yet. I’ve had good doctors and even went to Mayo Clinic. I’m still not getting better.

      Hang in there!

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