September 26, 2021 at 6:41 pm
Thanks for all the information.
EricSeptember 26, 2021 at 1:45 pm
Thanks for the input. I too have been taking ropinirole. I forgot one evening and needless to say I wasn’t able to make it through the night. I’m wondering if I need a dosage increase. I have no idea. If this keeps up I’ll give the doctor a call.
EricJune 30, 2021 at 9:02 am
Yes. My wife, who has not had GBS, had COVID just before Thanksgiving. She was asymptomatic and required no hospitalization. She too had her second dose of the Moderna vaccine on 3/14. As of now, she is fine having had no reaction to the vaccine.June 29, 2021 at 6:17 am
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.May 25, 2021 at 5:19 pm
I wasn’t clear. I understand the site is not a risk. However, there may be some (many?) people who believe the warning they receive from Malwarebytes is 100% accurate. It is highly probable that updating white lists/allow lists is a “foreign language” to them. And at that point they may be lost as participants.
I only raise this issue because the drop off in participation is large. I thought this might a contributing factor. Isn’t it possible that the problem could be solved at the Malwarebytes end? If they can say you’re bad it would make sense to me they could say you’re good.
EricMay 25, 2021 at 5:57 am
Jon, it’s good to hear from you. I absolutely agree with our adating to the scars. I feel very lucky that after 10 months I was able to walk (a bit wobbly) unaided. My balance is still not so great, but I’ve learned to get by. I found this type of discussion so helpful when I could barely get around using a walker.
Hopefully, others are paying attention and will join in. Thanks.March 16, 2021 at 3:31 pm
Had my second Moderna dose on 3/14. Other than a slightly sore arm, I am reaction free.February 18, 2021 at 6:32 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.March 13, 2018 at 6:56 am
I had major surgery for a perforated ulcer 2 1/2 years after getting GBS. As far as I can tell my recovery time was fairly normal.March 1, 2018 at 12:51 pm
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.March 1, 2018 at 6:51 am
I’ve been taking Ropinirole for over 5 years for RLS. I began with 1 MG per day which was helpful but still left me often with a lot of discomfort. The dosage was increased to 1 MG twice per day. That’s worked for me. I still have an occasional uncomfortable night, but nothing like before.
EricDecember 24, 2017 at 12:18 pm
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.December 23, 2017 at 3:23 pm
By 1973 I had all the cartilage in my left knee removed (prior to arthroscopic surgery). I got GBS in (October) 2012. When I was struggling with my PT I complained about my knee pain. My doctor (I think he was orthopedics) told me to build up my quads. I can’t believe the difference. It took at least 6 months, but for me it made a huge difference. I sill work my quads hard most every day, but my knee feels better than it has for 40 years.June 26, 2017 at 3:14 pm
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.February 2, 2017 at 11:24 am
Didn’t you forget buttons?