Info/tips on residual GBS symptoms?

    • January 12, 2024 at 11:06 am

      I was diagnosed with GBS in November 2023. I mainly had a lot of weakness in my legs, and tingling down my spine. I was in the hospital for three days and given the IVIG treatment. My spinal tap and blood work did not show GBS, and MRIs/CTs looked good. The doctors decided it was GBS based off of my symptoms. After the hospital I did get nerve testing and it was confirmed I did have nerve damage. It has been two months, there has been still weakness in my muscles especially my legs and some of my arms. It has improved but some days are worse than others, with the weakness. I have started physical therapy. The past week I began having electric shock feelings everywhere, tingling, and my arms will just feel really weird and feel like I have been laying on them when I haven’t. My muscle cramps have also been coming back and have been happening everywhere. My energy is definitely a lot better and has improved a lot since November.  I found out from the forums on here there can be residual symptoms. I was wondering if anybody had any information on residual symptoms they experienced and any tips on them? My neuro has only seen me once back in December and didn’t want to see me again until May. I feel like I haven’t really been provided much information by providers on the aftermath of GBS, and I am just not really sure what to look out for/be concerned about. Any advice/info would be super helpful!

    • January 12, 2024 at 12:20 pm

      Assuming that this is indeed GBS, it sounds as though you had a relatively mild case, which is good reason for optimism. I am five years out and am doing well, but have a small number of residual symptoms. The main one is some residual numbness in one foot, which can sometimes affect walking and other physical activity. I have had some other (mostly muscular) issues elsewhere in the same leg , but can’t be sure whether or not this is connected with the GBS. I have also had a change in bladder control and behavior, but given my age, that could possibly be coincidental as well. I had a lot of numbness, tingling, and other really uncomfortable weirdness in my legs, but it faded over 2–3 months after I got home  Other than these things, I am just about 100% recovered.  Given what I went through (inability to walk, a month in the hospital (including three weeks in rehab, some really bad pain), I feel pretty darned lucky. Once out of the hospital, I did PT, a supervised exercise program for patients with neurological problems, and a lot of working out at home. My advice: do the hard work now; it’ll really pay off. Good luck!