GBS for 17 months, not much change

    • July 21, 2019 at 1:45 pm

      It looks like I’m going to be living with this the rest of my life. Walking is difficult, stairs impossible, fine motor skills declining. I don’t have a lot of nerve pain, just intermittent. We have to give up our house and move to one level. I guess some coping strategies would be nice. Anyone else living with GBS long term?

    • August 14, 2019 at 6:10 pm

      Hi Carole, I am going on 20 months with GBS. In a wheelchair since De, 2017. Major change initially, but now on a plateau. I had 20 treatments of IGG over 6 months and felt better after each treatment. Now going in reverse with numbness even with aggressive PT twice a week. We also live in a two story home and had an Acorn stair lift installed. It was less than $3,000 and allowed us to stay in our home. This affliction has a 90% recovery rate, although some take a few years. Hope you and I are in that 90%. Keep praying to God for healing.

    • August 14, 2019 at 8:07 pm

      Hi! Thanks for the response. I have to say, I’ve been really discouraged lately. I am not as impacted as many people on this forum, which makes me grateful! However, I have been told there is no treatment, I was diagnosed too late for the standard IGG. I feel like I am losing more function and some days my symptoms are way worse than others. I have an appointment with my neurologist in a month. I’ll see my GP sooner and he might get me in. Our house is three stories, I thought about an elevator and stair lift but we might just sell instead. I have renewed hope that I will get better, my neurologist said he didn’t think I would…..I use a cane but I am going to have to start using a walker soon. Do you exercise? I’ve been doing Pilates, balance and resistance, hoping to keep some function.

      • August 16, 2019 at 5:53 pm

        Hi Again Carole, A bit of a delay with my answer-Sorry. You ask if I exercise. I do PT twice a week thru a Hospital program, and a little at home since I am in a wheelchair. My Therapist said the exercise makes it easier to walk if & when my GBS gets better. I too have my ups and downs with my recovery. Prayer & perseverance is where I am right now.

    • August 29, 2019 at 6:29 pm

      Thanks! Yesterday I fell and broke a vertebra in my mid-level back. So after a day in Emergency, they sent me hone, so now it’s a walker for sure! Never worry about slow reply’s, I haven’t looked at this page until today! I’ll talk with you again, I am doing Aqua exercise it’s helping!