In October 2008 I was dx with GBS. They started me on as soon as I was checked in! When they started it, I began to have a headach. After three days of an increasing headach, light sensitivity, ect., they stopped. After another spinal tap.. they discovered I had asceptic meningitis. Dr Hoig is a wonderful dr. He called to the University of Minnesota .. he explained the situation. The U of M drs stated he couldnt take a chance of giving me more. So I recieve 3 of 5 treatments.
I am disabled. I can get arround on my own in the house if I take it easy.
You have my prayers and posititve thoughts.
I have alot of respect for those going through treatments .

I have a story oddly similar to yours. I was diagnosed with CIDP in April 07 and then told by the same neurologist 2 months later that he was wrong. He has no clue what to tell me right now. Doctors get lost too. They follow a trail they have experience with only to abandon it when the answers don’t fit an exact pattern. I too wonder which way to go from here. All I can advise you to do is summon the strength to continue the search for your answer. The doctors might lose their way or fall back on an easier answer, but you can’t settle for that. As difficult as the struggle is, you have to put your mind/body/spirit in to the struggle and keep going. Along with that, all of us here will help with support, advice, information, or whatever we can offer.

I agree with you that all the testing can be terrifying, especially if doctors don’t do a proper job of explaining the results. But don’t be afraid here. You are among friends.

My 2 1/2 Year Old Was Diagnosed With Gbs On November 2nd. I Understand Your Frustration. Even Though She Can Talk, She Still Can’t Describe What Is Going On With Her Body. She Has Had Tantrums Where She Can’t Seem To Get Comfortable, And Is Frustrated. They Have Seemed To Get A Little Better Every Week. (she Didnt Have Tantrums Before Ths) Nights Seem To Be The Worst, We Have Found That Just Giving Her Motrin Before Bed Helps Her Sleep. We Also Go To Pt 2 Days A Week. It Has Been About A Month And She Is Improving. She Can Take A Few Steps On Her Own, But Is Very Afraid To Let Go. Its Been Hard Watching Her Go From Being So Mobile To Being Dependent On Me. I Know That Everyone Recovers At Their Own Rate, But I Have Also Been Wondering How Long It Takes Toddlers To Recover, And Havent Found Alot Of Answers. My Thoughts And Prayers Are With You. Dawn