Are CIDP attacks always the same

    • Anonymous
      February 23, 2011 at 8:22 am

      I am new to this site, and have “possible” CIDP. I have had confirmed GBS twice in seven months. Each of the GBS attacks have progressed in the same way, from my toes up to my bladder, worse the second time.

      The issue is that I have had many yet undiagnosed neurological issues that mimic MS, but have had every test several times to show that I do not have MS.

      Over three years I have had toe drop, double vision, leg pain, fatigue, tremors, and loss of strength in my hands and legs. It seems to me that all of these things are also part of CIDP, so I was wondering if CIDP could be different each time it hit you, or if it is always the same progressive pattern?

      I see my doctors in the next few weeks for follow up, so any answers would be welcome.


    • Anonymous
      February 23, 2011 at 6:46 pm

      In general, there are two types of CIDP, the chronic progressive, and the relapsing/remitting. To make matters more complicated, no two cases of CIDP are exactly the same. That is why CIDP is one of the hardest illnesses to diagnose correctly. On top of everything else, some with CIDP (including me) will be subject to nasty flare-ups. I will tell you that the symptoms you describe are all consistent with CIDP, and I have suffered all save the double vision.There are times when my symptoms will change around on me in terms of what is bothering me the most. No two flare-ups are ever exactly the same, at least for me. That might be what is happening to you.

    • Anonymous
      February 23, 2011 at 7:45 pm

      Thank you. It is what I thought from the material and from brousing the site, but nothing is better than getting the information from someone who has been there.

      BTW, I saw my neurologist, and he told me that I have CIDP. He will be working with Johns Hopkins to see what the best program for my needs is.

    • Anonymous
      February 23, 2011 at 9:47 pm

      Johns Hopkins is really top flight when it comes to CIDP. Dr. David Cornblath is renowned there. A lot of us with CIDP do improve over time and with the right treatment plan. I take 450mg of Lyrica daily for pain, and get 60g IVIG (Gamunex) every two weeks. It has worked well for me. I couldn’t imagine my life without these medications.