Is GBS helped by routine IVIG treatments?

    • Anonymous
      August 2, 2007 at 11:48 pm

      I was diagnosed with GBS in 10/05. After spending a week in the hospital getting worse daily until I couldn’t use my arms or legs, my face was paralyzed and my torso was numb, the doctor FINALLY started IVIG after knowing what was wrong with me 5 days earlier. Within a couple of days of treatment ( I had the 5-day IVIG in two days), I started to get better. I had one sudden relapse three months later and got more IVIG and got better again. 10 months later, I started to slowly deterioating. Six months later and a new neurologist ( thanks Gene!!!), I started a four month IVIG treatment. I felt great after the treatments and even had one day where I was active for 8 hours and had a couple of mornings where I had no pain and forgot, for a few hours, that I was sick!! Well, this is my first month off the treatments and I have more nerve burning and muscle spasm pain. I am thinking of calling my doc for another treatment as I am going on a trip in three weeks and want to be as fit as a GBS’r can be.

      MY QUESTION: Since my symptoms initially came on within a week fast and furious, I was diagnosed with GBS, but theI VIG treaments have helped me to feel better. S does this mean that I have CIDP or that someone can first have GBS which can turn into CIDP? I am really scared about never getting any better than I am and at my current level, I only work p/time out of my house. I do need to be able to work full-time to save for my son’s college in three years and since I was home schooling my son and had only been working p/time for 2 years before I got sick, I don’t qualify for disability. It stinks when y ou have your life planned out and can’t follow through.



    • Anonymous
      August 3, 2007 at 5:57 am

      Laura if you are getting worse and the IVIG helps you then you must have CIDP. GBS stop being active pass week 4 and if you still get worse after week #8 then you have CIDP. You should get your nerve testing redone to compare with your last one when you get worse. Also Laura some people need IVIG every 4 to 6 weeks other longer.
      I got CIDP in the fall of 2004 I just got my first IVIG treatments last week. % days of it now for me it is a waiting game wonder if I will need it again.

      Also yes isn’t Gene Great? Also enjoy your trip.


    • Anonymous
      August 3, 2007 at 9:26 am

      Hi Laura, What do you mean you don’t qualify for disability? You payed taxes didn’t you? You payed into ss didn’t you? File for ssd, you’ll be surprised what you qualify for. Especially if you have a dependant, check All avenues, its worth it. You can go from GBS to CIDP, I did. Relapses can be brought on with over exertion, rest is your best friend. Stay positive. Take Care.