GBS doesn’t ‘lurk’, it’s not a virus or anything – it’s your own immune system somehow getting the signal to attack your own nervous system. That runs its course and then is over and done; the lingering complaints you have, if you did indeed have GBS, are results from the damage done to your nervous system by the ‘attack’. GBS harms a protective layer around your nerves, resulting in a worsening (or failing) of the signals travelling to your muscles. That damage can heal, depending on the person, age, severity of the attack (low in your case, luckily), but it is possible to have residual effects that don’t go away. But these after-effects are the result of damage already done, you don’t need to worry about GBS still being there or anything. There are some cases of a 2nd case of GBS in the same person, but that is extremely unlikely.

As for your choices in your treatment: GBS is extremely rare. The chance of a doctor encountering it during his career are not high, so some confusion and disagreement among doctors is normal, and is actually something that should be encouraged: they are just making sure there is no scenario they are not considering. (check out different hospital series on tv – they do this all the time). Of course, they should do this in private, not in front of you, and certainly not if they see it makes you nervous.
While I agree you should always think for yourself instead of blindly following a doctor’s advice – they are your best shot at getting better. A spinal tap is essential to quickly rule out other causes and get you treatment before the condition worsens. You had a very mild case – but in more severe cases, a quick diagnosis can be the difference between life and death.

Anyway, my main point here is: your residual effects will decrease, and even as long as 2 years from now your condition can still improve. There is no reason to worry now, your body just needs to repair the damage done.

Keep your hopes up! Search on youtube and facebook for Holly Gerlach, a woman who had GBS after having just given birth to her daughter, and who is doing extremely well now.
My mom (72 at the time) got GBS and was on a ventilator for 17 months… she was in ICU for 5 months, and couldn’t speak for 3 of those. While that was a very, very long time, younger people recover faster, and they often have far fewer residuals effects. Although my mom is now in a nursing home in a wheelchair, she did get off the ventilator (even though they said she wouldnt), learnt how to eat again and can move herself around. As contrast: Holly Gerlach, in her 20s, now goes to the gym on a daily basis.

My mom got GBS two weeks after getting the last of 3 vaccinations needed for an operation (she did not get in the end). ER doctors said they suspect them to have been the trigger. Still, mom had a very persistent cold as well.
In any case, I’ve read that such a trigger may trigger GBS in combination with a genetic predisposition. Mom has also suffered from Hemolytic Anemia for the past 18 years or so. I am sure sometime in the future they’ll discover this is all related somehow.

Thanks Lauren. How is your brother doing now? Any movement yet? I am running a charity race for GBS research, tomorrow, together with my sister, and will keep him and all of you here in my thoughts.

Hi Heidi,
thank you for your reply, so good to hear your mom is doing well. My mom is slowly improving. Last week they began trying to ween her off of the ventilator, and this week, she was able to eat for the first time in 8.5 months. She is moving to a nursing home on Tuesday. She can lift her hands to eye height, and can wiggle her toes, but no fine motor skills as yet. Keeping our fingers crossed.
Marcel

This post was about a year and a half old, but still, would be good to hear how JackBurton is now. My mother takes prednisone daily – and has been doing so for 17 years… she got it for aan autoimmune condition called Hemolytic Anemia. She had varying dosages, but most recently it was 10 mg/day, and 20 if her HB levels were low. Her hemotologist had actually been trying to get her to agree to getting her spleen removed to try and cure the condition, and it was when my mom finally agreed, and got vaccination shots for the procedure, that she got GBS. During the first 8 months in the hospital, she didn’t get any prednisone anymore: because after her treatment with immunoglobin, the Hemolytic Anemia seemed to be gone! It stayed gone for 8 months, but now it appears it is back, so they started her on prednisone again, with a kickstarter of 75mg for a week, and 20mg after that. The results are great. She has a lot more energy, is more awake and less confused. No twitching or other side-effects.

Hi Heidi,
I wonder how your mom is doing now. I have only just joined this forum, and seeing how my mom has been in the hospital since december 1st, I suspect your mom may still be there as well.
My mom spent a total of 152 days in ICU, and just went to rehab on May 3rd. However, due to unexpected sudden lowering of consciousness and drops in heartrate and oxygen, she is now back in the hospital (not ICU) for tests, before they let her go back to rehab.
There is a lot of information about GBS on the internet; google it! One suggestion I got from an ICU nurse who also teaches, is a video made by Holly Gerlach. Granted, she is much younger than our moms (mine is 72), but the video shows remarkably recovery and is inspirational nonetheless: https://hollygerlach.com/my-youtube-video/
She also wrote a book about her experience.
I just ordered another book as well, written by professional (one of whom had GBS himself) and describing the process in detail: check out: Guillain-Barré Syndrome – from diagnosis to recovery by Dr Gareth J. Parry and Joel S. Steinberg MD PhD. It is explained in laymen’s terms.

By the way: my sister is an occupational therapist and hand therapist, and actually had an 81 year old patient who had gotten GBS when he was 74 – he could walk and do almost everything 🙂

Stay positive!!