Still feeling effects after 6 years

Your question was “does anyone in this forum have the effects of GBS that I still have?”. Yes! and I am post 12 years. That is not meant to discourage you!! As others reply and as you continue to search thru the threads, you will find that most of us have lasting effects to deal with. There are people who don’t but not many continue to post here once they are “back to normal”. (I once read that normal is just a setting on your dryer:D )

Welcome to our GBS family ~ make yourself at home!

I agree with Judy. We all have some effects. Keep reading and keep your chin up. This forum helps me year after year!!!

I am post GBS 3 years and my residual pains and effects are identical to yours. I went 18 months with a dx of CIDP. I’m glad that my new doc changed it to GBS with residuals. I now have hope that I can get better maybe even cured. The only thing that will cure GBS is time, maybe I’ll have time in this life to get well.

I was diagnosed in June of 2002, paralized for 2 1/2 months from feet to shoulders, IVIG, rehab for a year. I have off and on numbness just behind my toes. No pain anymore (Thank God!). I have a power chair to go out but use a manual W/C and a walker at home and attempt at a quad cane, successful but soon stagger. My biggest problem was my legs and was a long time before I could stand up without my knees blocked. I wear AFOs. I have a few bowed fingers and one stiff thumb. Cannot close my fist all the way, but almost. I can type fairly easily, my handwriting is terrible now. I have a slight tremor in my hands at times. I’ve learned to deal with the fatigue and its not a big issue usually for me unless I overdo. Improvement has slowed to a snails pace but at 66 years I’m not looking to run a marathon anyway. I thought I was in bad shape til I moved into a high rise building with the heart attacks, diabetes, stents, etc., that live here. I keep very busy and just found out I can crochet again so have joined a group to make baby blankets for charity for new mothers who have nothing. I can’t live with my family anymore but I’m doing okay and have many new friends here. I can still go out thanks to Paratransit bus. Things could be worse. And they were at one time. I do what I can, when I can, and how I can. Aside from the residuals I have good health. Other than a 24 hour flu in rehab and one day of virtigo since I came home I haven’t had anything, not even a sniffle or a sore throat. I do wonder if this has kicked my immune system into high gear but I also wonder if that is what got me into this trouble to begin with. Who knows?

hi there. i sent you a private message yesterday. please check your “private messages”. you’re in my prayers too!
deb 🙂

GBS is a terrible illness and yet in many ways those that have it seem normal to others. Most who post here either had CIDP or GBS with significant residuals. While improvement occurs there are also the bad times. GBS — Getting better Slowly.

hey, glad you found the forum. it was a huge help to be able to share the fears and the pains one goes through with this monster inside.

my case was not as severe, but many of the symptoms and artifacts you experience i, too, relate to. except perhaps lv. although i go to conventions to lv about once a year, as it’s not my kinda place. you may be of help to me with this – perhaps i’ve just not found there what you have! being from norcal, i prefer peacerul and less glitzy tahoe.

seriously, though, the cramps have subsided, and hamstring stretching, pushing a bit, but really LISTENING to my body, has really helped me climb out of the hole. the numbness is there and rest and LISTENING to my body are important. the energy levels may have leveled off, but i’m thankful for every breath i take.

any day upright and not 6′ under is a good god-given day.

i, too, revisit this forum, drawn to the suffering and inspiring souls who share their pains and the joys, as only those who’ve gone through it can.

take care, and welcome to the forum,
ferenc
8+ weeks gbs 7/05

Just want to say welcome and glad that you found us. Your residuals are alot like mine, I am 39 months post. Hope to get to know you and take care.

Jerimy