GBS for 17 months, not much change

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This topic contains 3 replies, has 2 voices, and was last updated by  Thomas Banditelli 1 day, 19 hours ago.

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  • #116478

    Carole Popick
    Participant

    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?

    #117088

    Thomas Banditelli
    Participant

    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.

    #117091

    Carole Popick
    Participant

    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.

    #117094

    Thomas Banditelli
    Participant

    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.

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