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 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 5:58 pm
Hi Amy, I had 20 treatments of IGG at the rate of four treatments a month. Only temporary change for the better. Now in reverse and getting more numbness in my ares and legs. I had a friend that did the plasma exchange treatment and he is good after 15 years. Wish I should have opted for Plasmapheresis.
Full recovery rate is very high. Wish you the best of luck and know the Lord is watching over you.August 14, 2019 at 5:45 pm
Hi Kathy, I have been dealing with GBS 20 months now. It came on after a bout with shingles in December 2017. I also have CLL that lowers my immune system. I went thru 20 IGG infusion since January 2019, four days a month. I must say a few days after each IGG infusions, I felt a change for the good. I was sorry to hear the IGG damaged my kidneys, so I will not do that again. I felt good for about 6 weeks and now going in reverse. Legs and hands are becoming numb again. My friend was in worse condition than me and went thru Plasma Pherisis (probably spelled wrong), and had no side affects. He had the treatment about 15 years ago. So if you need IGG or the plasma exchange, I would choose the plasma treatment. This is a weird medical problem, and I read there is a 90% recovery rate. Hang in there, listen to your doctors and do PT a few times a week. BTW age plays a part of the recovery process, I was 75 when it got me and still fighting. My the Lord get you thru this affliction.July 10, 2019 at 12:25 pm
Hey Jon, I feel your frustration. I had 20 IVIG treatments since January 2019. Just found out my kidney function is now a few points above failing. Four days a week each month with a month off in May. Urine tests with the start of each session and nothing ever said about failing kidney. Dr said I should listen to my Neurologist and have IVIG again if they think it would help my GBS. No way will I ever go thru that again. I believe it helped the first few treatments, but the rest were a waste of time and money. Thank God my medical insurance paid the super expensive cost. I’m doing PT twice a week with very slow progress. Dealing with GBS for 18 months and in a wheelchair all that time.