It will be 8 years next month since getting GBS. I am scheduled to get my 1st shot (Moderna) next week Monday. I guess it’s normal for all of us to be a little nervous before the first shot.
Got my first shot of Moderna this morning.
Got my first shot this morning. Moderna.
Here is a link that my primary doctor sent me. After reading it, is when I made up my mind about getting the Covid Vaccine. COVID-19 Vaccines and the GBS|CIDP Community - GBS/CIDP Foundation International… I did get the one shot Johnson and Johnson and had no problems with it. I too was concerned about getting the vaccine because originally I got GBS from the flu vaccine in 2013. It as been a week today since I received the vaccine and am doing fine.
I am almost 6 years post GBS from a flu shot and received the first dose of Moderna vaccine 5 days ago. Night of the vaccine brought horrendous migraine and nausea which carried into next day along with muscles aches. The days since migraine is a bit milder but now have weakness in my legs and increased tingling, numbness and blurred vision. Really want to see this through and get second dose but this makes me wonder if that is the right course of action.
Got my second shot 2 weeks ago. Minor side effects like sore arm and minor headache, that’s all. I didn’t even worry about whether or not I would get serious side effects or trigger my GBS again. If you worry a lot about it after you get it, you could trigger a psychosomatic response. But, it all boils down to what you want. I don’t know if risking catching COVID is any better than getting vaccinated and coming down with side effects. But first and foremost, ask your doctor before getting the vaccine.
I was diagnosed with GBS twice. 1st was in y2012 and the 2nd One was just a month ago 5 days after I was inoculated with the covid vaccine. I was rushed to the same hospital where I was admitted 9 years ago. Also, the same neuro took care of me. After completing sessions of plasmapheresis I was able to walk and now I’m almost completely recovered.
After much research and pressure to get the Covid vaccine, I received my first dose of the Pfizer brand around 5 pm on October 4th. The next morning I woke up to numbness in my neck and lower face, swollen throat and restricted airway. I could already feel some numbness/weakness in my left leg which continued to progress along with numbness/weakness in my right arm. I took Diphenhydramine which helped the throat/breathing symptoms until 4 hours later when all symptoms recurred. I kept taking Diphenhydramine every 4 hours and upping the dose as the reaction kept worsening. My doctor started me on low dose Prednisone because I react negatively to it but the reaction kept worsening. There were days where I had numbness deep in my throat and had difficulty swallowing, bradycardia, and cranial nerve pain. I was able to get in to see my primary doctor and neurologist. I still have reflexes and had a good EMG. He is hopeful that I will recover in 2-3 months and thinks it may be small nerve damage primarily. I am three and a half weeks out and still having numbness/weakness in my legs. It’s been so discouraging but I’m fighting my way back and have scheduled some upcoming PT.
Hi Jess! I just wanted to follow up to see how you are doing now. I have had 2 weeks of physical therapy now and it is really helping. I still have numbness & weakness in my legs but it is definitely improving. I have a lot of deficits in my hips that they are targeting and that is helping me use my legs better while the nerves regenerate.
Hi. I hope you’re doing well on your road to recovery journey. What was your doctors diagnosis? You have to help your self by having physical therapy relegiously it really helps. You asked me about my condition now? Im super fully recover! My doctors were very Happy of the result. Im back to work since Sept. Everything is normal now.
I am so glad to hear that you are fully recovered!! I had an EMG that was normal but my neurologist thinks it is small nerve damage and that I should recover in 2-3 months. I started physical therapy 2&1/2 weeks ago and do the exercises at home in between PT visits which are twice a week for 4 weeks. Seven years ago, I had what was believed to be a mild case of GBS following a TDAP vaccine. I fully recovered that time with PT. I am hoping I will do it again. Hearing that you recovered is very encouraging!
I experienced similar symptoms after second dose of Covid vaccine. Doctors are still discussing me getting a booster. I am not sure I want to risk it. Just wondering if you are considering it.
Hi PattyB, I’ve had about 5 weeks of Physical Therapy now. I am definitely improving but still have numbness in my legs. I still can’t teach Zumba or run like I did previously. I have not been able to even do Zumba. I had just starting teaching on weekends at my gym and I loved it so much. My primary doctor does not recommend me getting any addition vaccines and has written an exemption letter. I’m two months out from receiving that first dose. Did you recover completely?
Hello, I am so sad that you are experiencing all of this. It is difficult trying to stay safe with the vaccine but then risk set backs like this. I am still experiencing symptoms also (lots of numbness and tingling, weakness,vertigo and gait disruption)Taking one day at a time. I truly appreciate your feedback and wish you all the best in your recovery.
Happy holidays!
Hey PattyB, I really am sorry you are experiencing this too! I don’t know if you have tried Physical Therapy yet but wanted to let you know that they found that the gait and balance issues were coming from nerve damage in my hips and adductors. They have targeted those muscles very gradually twice a week for the last 5 weeks and it has really improved my ability to walk smoothly. If you haven’t, you might want to check about it. They also fixed the vertigo which was also nerve damage affecting those muscles. I am seeing a PT who specialized in balance disorders. I’m hoping the nerves will regenerate and the numbness will go away. If the damage is not too bad it can regenerate and all feeling can return. That’s what happened with me after the TDAP. I wish there was more information out there for people with these injuries to know what to do to help them heal better. I see the neurologist again end of December. Hope you feel better soon and happy holidays too!!
I am a almost 40 years removed from GBS onset. I recovered very well but had lingering effects that finally led me to retire at 57. I resisted the covid shot frenzy push and still do not push it. I’m an informed choice guy. You get informed and decide. I have never gotten a flu shot and never will. I did get a shingles vaccine a few years ago on doctor’s advice. That same doctor really wanted me to get the covid shot but I said not now. After numerous folks I know got covid and either were sick, hospitalized for weeks or died, I decided that I did not want my family to have that kind of stress and burden if I got covid. I have underlying issues, lingering GBS issues being one, so I got the Moderna 2 shots. basically a sore arm and shoulders after. I’m 3 weeks removed from second shot.
I’m not anti-shot but am anti-mandate! Make an informed choice either way and live accordingly. accept your decision and live. Not sure I will get a booster and really hesitant to get a shot every year.
I should get on here more often because it is interesting to read folks accounts. I also want to add that without God I never would have made it this far. He has been there all the way.
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Hi, I am a newbie here and this conversation is very interesting to me. I got GBS after a flu shot. My doctor tells me that I should not ever get any type of vaccine. I find it interesting that people with GBS are getting the covid vaccine. I battle with this question daily - to try it or not.
Hi Dee,
I struggled with this dilemma so I know how you feel. I spoke with my doctor, looked at study results from GBS patients who received the Covid vaccine, reached out on sites, and with increased pressure from my job, family, and friends, decided to get it. I felt so regretful. So many people told me that I should be okay but I wasn’t. It was ultimately my decision though and I tried it. I have spent thousands yet again and even worse have had to fight my way back. I am better but still nowhere near where I was previously. I don’t want to discourage anyone because Covid can be so serious. However, I want to let others know what happened to me. I still don’t have all of the feeling back in my legs from the nerve damage and I’m 4 months out. I completed my first Zumba class since this happened this past Sunday. I was completely wiped out the next day. I am not giving up. I really want to teach again. I may try to do another class tonight. I really wish research would be done to help us with this. I am sorry that you are in this position and wish you luck with your decision.
Thank you for sharing your experience-as I am not completely recovered myself from the flu shot, I am holding off on the covid vaccine - I know that this is a personal decision and not trying to influence anyone else in their decision. I pray for your healing.