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Had my second Moderna dose on 3/14. Other than a slightly sore arm, I am reaction free.
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.
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.
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.
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.
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.
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.
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.
Didn’t you forget buttons?
I had GBS 4 years ago. I had the Prevnar 13 shot a year ago on the advice of my PCP. I’ve had no issues.
When I was a little over 3 years I had another round of P/T specifically directed at improving my balance. It really helped. Though you will never find me on a balance beam, I now get up without holding onto the nearest stable object. And, in the last 8 months I have not fallen at all.
Here’s my timeline as I recall.
10/15/12 – Went to hospital slurring my words. Otherwise,felt okay.
10/16/12 – Coma begins. I think they added the vent then.
12/10/12 – Wake up. Not exactly sure of the date. Pretty close since it didn’t seem that long before they shipped me to rehab hospital.
12/19/12 – Arrived at rehab hospital. At this point the only movement I had was being able to touch my right ear with my index finger. My left wrist was limp and my right foot was dropped.
1/24/13 – Went home. I was able to go maybe 50 steps using a walker. I needed assistance to get up to use the walker. I used a fork with extensions.
1/29/13 – Started out-patient OT and PT.
2/15/13 – Graduated from the wheelchair. Was able to get up on my own to use the walker.
4/15/13 – Graduated from walker. Had an ankle brace on my left leg, a brace from my knee to my ankle on my right foot, and used a cane with 4 legs.
4/19/13 – Had first movement of the wrist. 3 days later my OT measured it a 19 degrees. Not much but a major highlight.
5/31/12 – Finished OT. I am still doing at least half of the exercises daily. My left wrist works fine but it still is not as strong as the right one. Also, on this date I started water therapy.
7/31/2 – Finished PT. I was able to walk unassisted though with a noticeable limp.
12/15/15 – Started balance therapy. As far as I understand, the muscles we develop as we learn to walk (and before that) as a child lose their tone after all that time I was not able to walk. With the daily exercises I was given from the PT, my balance has improved dramatically. Now I can just get stand up without feeling I might fall. As an extra benefit my PT corrected the way I relearned to walk. My right foot is now doing heel to toe. I was walking flatfooted so as not to fall. That style is no longer necessary.
8/15/16 – Currently, my arms from my shoulders to my wrist work fine but always feel a bit stiff. Sort of like waking up and needing to loosen up. I don’t have all the feeling back in my fingers but I can now do normal buttons but don’t ask me to pick up a penny from a table. As I mentioned before my left wrist works fine but is slightly weaker. My right leg from my knee to my ankle aches a bit all the time especially at night. Most of the time I can ignore it. I do lose a couple of nights sleep each month. My right ankle is somewhat diminished but considering it didn’t work at all I’m quite pleased with its progress. And as all of use know, we learn to live with uncomfortable feet. I assume my are no better or worse than the rest of us.
I hope you find this helpful.
I had absolutely 0 movement in my left wrist for 6 months and 4 days(who’s counting). But, the next day it moved a bit. The day after that I had OT and she measured the movement at 19 degrees (which isn’t much but it is not 0). That was late April 2013. Today, I have complete use of the wrist with slightly less strength. I still do my OT exercises daily so that maybe someday all the strength will return.
Keep up the support. He’s lucky to have you.
Here’s something I found comforting early on (I wasn’t alone in how I felt) and I hope it helps you. When I first was able to use a walker I would get up after sitting a awhile and those first couple of steps were awful. The feeling was like my calves were going to tear. Well they never did. And pretty soon that went completely away. Hope you find this helpful.
I was loaded up with all the shots in September 2012. My granddaughter was born 10/1/2012. I got GBS 10/15/12. I’ve never received a vaccine since September 2012. My grandson was born 7/13/2015. I have been baby sitting regularly from the first week. My grandson is okay. Me too.
Good luck. It’s going to be a tough call. But, for me, I’d rather wait awhile to see the grandchildren than go through GBS again. I hope you don’t have to make the choice.