Reply To: Long Newcomer Story/Guidance Needed

Hello
I’m from Texas as well. Gbs is very difficult to deal with. I was diagnosed in 2016 but it took almost 2 months to get diagnosed. I started with numbness and weakness stated in my feet and traveled up my body. Within 3 weeks I was paralyzed. I kept going to Er and they kept sending me home telling me it was my imagination. I was imagining I was losing my legs really! When I lost my legs they admited me to hospital they still didn’t figure out what was wrong they kept me for 3 days then sent me to a nursing home the doctor said he didn’t know what was wrong and he wasn’t going to look for what was wrong. I ended up back in Er a week later. They finely did a spinal tap and that was when they diagnosed me with GBS. I was Intensive Care for 3 days and in hospital for almost 2 weeks. When I came home I was in a wheel chair and I couldn’t even turn over in bed by myself or pull myself up. That was in June of 2016. The numbness has gone all but my feet. And now I am diagnosed with CIPD. And I take IVG treatments every 4 weeks. Had to have a port put in due to my veins wont handle the iv’s I kept blowing out veins. But I am walking now with the use of a cane when I get out. And without one inside my home. I even drive myself to town. I don’t have anyone to drive me any more so I don’t have much choice. My feet are always numb some days i cant feel my toes at all which gets real scary for me. And my feet are always heavy and feel like a tight band around them. I have nerve pain in my toes. I have a lot of muscle weakness. I have good and bad days. I don’t know if any of this helps you at all. You need a doctor that is experienced in treating GBS. I’ve got to change doctors myself and it looks like I’m going to have to go to Dallas which is a little of a drive for me. Not sure if I can drive that far with my feet.