Reply To: Was I misdiagnosed? Here's my strange GBS story.

January 24, 2018 at 12:44 pm

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.