I had the second dose of the Moderna vacine in 3/14. To date I am fine. The reason I confidently took the vaccine is because of the advice I receive from my cousin, a retired infectious disease doctor. He told me (in simple terms) is that the COVID vaccines, Pfizer and Moderna, are nothing like a flu shot. Again, in simple terms, a flu shot injects the patient with a small dose of the flu to build up ones immune system while the COVID vaccine blocks COVID and does not attempt to build up the immune system. So, as far as I understand, the risk/reward of getting vaccinated against COVID is so overwhelming in favor of getting vaccinated. I am now 100% vaccinated and relieved that I am.

I had a fairly severe case of GBS in late 2012. This past Sunday, 2/14. I received the first dose of the Moderna vaccine. As of now I’ve had no reaction. My second dose is on 3/14. I’ll let you know how that goes.

Over the last 2 years or so I’ve been taking 400 MGs of Magnesium per day. Additionally I’ve been drinking diet tonic water throughout the day, for its quinine for muscle cramping. Its been helpful but not to the extent the Ropinirole is for me for RLS.

I seem to get cramps in bunches. I’ll go 2 to 3 weeks in good shape, but, then a couple of days of countless ones. I think colder weather is a negative factor but I’m not sure. This has not been the perfect solution but it is much better than anything I know.

To start I sat in a chair and did 3 sets of 10 leg extensions every day. After awhile I added 2 and 1/2 lbs weights. Once that became easy I added 3 sets of 15 getting up from a chair using only my legs (I kind of hold my arms in “I dream of Jeanie”). Finally, I was able to do deep knee bends, 3 sets of 15. Almost forget I joined a gym and do 3 sets of full leg extensions every other day. I think it took close to 2 years to get where I am today.e

As for IVIG, I was really lucky. The emergency room doctor had seen a GBS case before. After determining that I had not had a stroke he suspected GBS. Within 48 hours IVIG was administered. I realize the good fortune I had so it helps me grind through the work.

I hope this helps.

Hi, I am the wife of a man with GBS who was in a coma for 8 weeks. I was also told that he was in the 1% of most severe cases. My husband presented from the face downward and was on a ventilator for many weeks. In addition, he also had hospital delirium. We had recently moved and I was all alone. I know that it’s hard, but you have to keep hope alive. Every day I went to the hospital with books and music that my husband liked, and shared interesting stories from the news or family members. I spoke to him constantly, but I think that I was also trying to keep myself together. Eventually, and very slowly, he recovered after much therapy and hard work and now is able to walk, talk, and even play golf! We cherish our time together and each other. Have faith, try to not lose hope. Talk to others (or yourself if that helps!) and be kind to yourself, too.