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I had a very severe case of GBS in 2014. Got a typhoid shot in 2018 for Asia and a Yellow fever shot in 2019 for South America. I had no issues. The travel Dr. I saw was fully aware of my history. I am also planning a safari in Tanzania for spring 2022.
Elvira – My EMG tests were interesting, but not particularly useful to me. I was on tube feeding for 12-months and lost 50 lbs. Not sure what vitamin supplements, etc. were in the feeding bags. Once I was cleared for liquids and solids, I was given several general vitamin supplements & protein powder. I stayed on that for another year, before dropping down to just 1 common vitamin supplement per day (generic over the counter). Weight went back up 30-40 lbs and I try to stay there. Pool therapy was very helpful for me as well.
Elvira – I had EMG tests for nerve conduction at 1-year. 2-years, and 4-years. Most nerve improvement came in the first 1-2 years for me. Not much change after 4-years, however, my Neurologist said there is nothing stopping me from building muscle and that even a small electrical signal can move a big muscle. He also suggested that I lose 20lbs. I said I didn’t think I was overweight. He said “he never suggested that, rather, the same muscle can improve functionality if it has less weight to move around”. Thus, I try to build muscle and keep my weight in check.
I had a bad case in 2014, going from healthy to a ventilator in 1/2 day. I was 4-months in hospital, 9-months in nursing home, & 5 months in rehab. Discharged in a power wheelchair. It took another 6-8 months to walk with sticks, which I stopped using about 6 months later. I no longer qualify for PT, so for the last 2-years I work 3-days per week with trainer/s at a private gym. Now days, dead weight lefts and squats with weight help build muscle the most. I am still improving incrementally. I retain some neuropothy in my feet and have minor hand tremors, which I think will stay with me. Stairs are still a challenge, but any kind of railing helps significantly.
I had a severe case of GBS 5 years ago. I experience many of the same residuals you have. Nerves seem to come and go at times (face tingles, hand tremors, etc.). I’ve learned to ignore most of it. I have not experienced an illness that brought on effects such as you described, but I could certainly see how something like that could happen. My closest example has been a sleep study where I stopped breathing 67 times per hour. Normal is 3-5. Neurologist says that GBS weakens the entire respiratory system and put me on a CPAC machine. I suspect the same weakness occurs throughout the body.
I had a severe case of GBS 5 years ago. About 2 years ago, I decided that I wanted to travel more extensively (retired now). I’ve have had the following immunisations since then: Yellow Fever, Pneumococcal, Td, Typhoid, and Shingles. I have talked to my primary doctor, Neurologist, Travel Clinic doctor, etc. GBS is so rare that there is no information available regarding any of these shots connected to GBS. I do not take the flu shot, which I understand had a history many years ago of being a trigger for GBS. Without any data to go on, I have chosen to get the above shots and travel…
It has been 5 years for me and I had a very severe case of GBS, going from perfectly normal in the morning to a ventilator in the evening (1/2 day). I’ve had 3 EMG’s testing nerve conduction at 1, 2, and 4 years. The results show most improvement in the first year. I understand that 1 – 1.5 years is typical to get the most results. I still have some tingling / partial numbness, but it seems to keep getting incrementally better over time. It took a year before I could start to use a walker. As you say, every case is different and unique and it’s hard to draw parallels.
Letter boards worked for me (rows and columns). They tried to get me to use a computer that followed the pupil movement in my eyes and that movement would move a curser across a computer screen to form letters. It worked, but I didn’t like that approach. Then they tried having me use a mouse that sensed my slightest motion, but I didn’t have any movement so it didn’t work. Letter boards worked well for me, but everyone needs patience. I was in the hospital for 4-months with only eye movement. I could see and hear everyone around me and just having people there talking to me helped my spirits. The letter board made 2-way communication possible.