Reply To: Residuals? 21 years later?

Hey everyone,

Just an update from those who were following this post.

The University Neurologist basically told me that I had permanent, residual damage from the GBS. He believed that, because my strength was good, that I could “forget about GBS”. Needless to say I was frustrated.

I take Gabapentin 2x a day, walk with forearm crutches now, have neuropathy, issues walking, can’t go up stairs much. GBS affects every part of my body, from my bladder to my blood pressure and heart rate.

My primary care doctor is very educated and has basically suggested that GBS is affecting me now. I have done my own research and have found articles about “post GBS”, similar to “post polio syndrome” and feel that is what I am experiencing. I also read that folks with GBS do not recover from fatigue the same way that others do. There are two articles I am speaking of. I will link them at the bottom of this post.

I am suffering from dysfunction of the autonomic system now as well, which was controlled by a medication (originally I was told this was anxiety). I have to now take it only 1x a day because it was causing my blood pressure to drop while switching positions. So, now my heart races a lot and is all over the place, causing me to be dizzy, lightheaded, etc. I am seeing a Cardiologist on the 24th of April.

My urologist is having trouble controlling my incontinence, and suggested a few things for me that are invasive. One of them that sounds promising, is basically a pace maker for the bladder that is surgically inserted near the back. However, I would not be able to have MRIs with this, which is troublesome. I am still deciding what to do.

As far as the physical side goes, I am in Physical Therapy 2x a week. My PT is pushing me a bit farther than I would I like. The bike she has me pedaling on causes neuropathy in my feet, and I have told her that. It was really getting bad on Thursday, and she told me to just “pedal through it”. I have never experienced such pain and ended up crying after getting off the bike. I do not want my sessions to be like this, so I think I am going to have a talk with her.

I started walking with forearm crutches, and it uses a lot of muscles that I am not used to. It is very difficult but I hope I get used to it. Walking is really hard and I don’t really leave the house except for appointments and with my room mates. I am very much in pain a lot when I walk. I wonder what will be the resolution.

I hope that everyone here is doing well and thank you for reading this post.

Here are the links to the articles referencing post GBS and fatigue in GBS:

Post GBS: http://www.gbsnz.org.nz/research_and_resources/does_guillain-barre_syndrome_recur

Fatigue in GBS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824125/

Good luck everyone!