Hello. My name is sue iam 55yrs old. I just retired march 1,2914 after 20yrs in las enforcement. I ran 6 miles every other day, rode my bicycle. Had a horse. I would say I never stopped ,didn’t know how. I lost my mom in oct, retired in march. Was going through a lot, felt ran down. I woke up may1,2014 thought I slept wrong my hands felt funny. I was gone all day that Friday, busy Sunday. By Monday may 4, I knew something wrong but I had plans gone all day. May 5, I drove myself to hospital thinking I was having a stroke. Was told in the hospital (er) nothing wrong go home buy a cane. I refused to leave. They admitted me. Next day spinal tap. Found out I had GBS. I didn’t have the flu shot. If anything I was ran down. I was there a week. After that to this date one pt, just switch to another doctor. I can’t find anybody (doctor) that will trat me. I weak legs tingling hands feet. The pain in my hands is horrible. Taking vitamans no meds. I learn more from people on line that have GBS. What scare me the most is will it come back? I know it will take to somewhat recover. This is a horrible thing, and doctors don’t seem to know what to do. The first doctor wanted to treat me for everything but. Couldn’t find anything else wrong.

Hello Tally,
From a very healthy 57 year old who was in your shoes, I say get yourself to a neurologist ASAP. GBS is rare, and unknown territory even for the most informed.
Educate yourself online as much as you can beginning here:

Good for you that you stood up for yourself at the Hosp!

At three months in, I would say you aren't doing too badly. That's probably hardly any consolation, but if you can feel pain in your extremities, that's actually kind of a good sign at this point. It means the nerve damage didn't get so far that it all went south. Be patient and wait for recovery.

Good luck!

Hang in there Sue! Stay positve and keeping working toward improvement. It is totally worth it!

Hang in there Sue! Stay positve and keeping working toward improvement. It is totally worth it!

I totally understand. I am 48 and just left my neurologist with an encouraging news. He said it may take me at least 6 months to recover but I'm thankful for the possibility. I was running 4 to 6 miles a day at least 6 days a week. I am happy to be able to walk in my neighborhood now. Apparently, I had a mild case (some cranial nerve involvement along with my back, arms and legs). It's best to keep stress as low as you can but get it checked out. I'm going to try Physical Therapy. It takes a longer time for nerves to heal. Stay strong!

GBS does suck. Didn't anyone treat you with plasma exchange or physical therapy? As a retired civil servant you must have good health coverage, aren't there neurologists in your city? I'm 58 and trying to get back to my life from this "syndrome". My hands appeared to be the first onset, but in many ways I rely on my hands most so it would make sense that I would notice that first. I have Celiacs Disease and always attribute everything to gluten, not sure if I had food poisoning or virus of any kind. Certainly no immunizations recently. Only those fools at the ER who diagnosed me with carpal tunnel syndrome discounted my diagnoses, the next day my neurologist sent me directly to the hospital, and this was 8 days after my first symptom presented itself! I'm a cancer survivor, confident and courageous. Do you research and don't back down when you know you're right! Most health insurance providers have patient advocates, get one of those if it's not in your character. Good luck and bless your strength and your courage!

Thank you everyone. :). Iam just done with doctors right now. Went to a new one last week she would not give me anything for the pain. Said take over the counter for your arthritis. Told her I didn’t have arthritis it’s the GBS. Went next day to have nerve test. Hurt like you know what. Doctor hit a vein in my hand it’s all black and blue and swollen. He says you have GBS it will heel in to e, no need for you to come back. Iam learning so much all of you thank you. The only fit that iam done with are the doctors now, I started swimming, with a kick board just have to be careful getting out of pool. Need to find a trainer to put my bike on. Baby steps but I will slowly get there :), again thank you so much everybody.

Good to hear you found a PT regimen you like -- swimming is great. You might want to try a pair of those flexible water/swimming shoes. I use them, because it hurts to go barefoot, in the pool or out.

Good luck!

Yes thanks to all of you. I was able to swim in my dads pool. I do it every other day. Like I said just have to watch getting out. I will look into the water shoes thank you :slight_smile:

Amen to the water socks Lance. 1st time I wore them in the pool I had tears of joy because I could walk without my feet hurting. It had been almost a year since I experienced that feeling. I love walking and haven’t been able to without pain

Ok bergerhoo and lanceb going to go find the shoes tonight :). I don’t want to feel the pain when I walk in the pool. It’s weird how we walk from the GBS. Iam so careful going down the stairs. I trip a lot so I try to be real careful :slight_smile:

Yeah, it's weird how that is. I use unicycling as my personal PT regimen, and I can go 20 miles or more at a time, but I still have to use the handrail going up and down stairs. Stairs are still hard!

Lily the health care sucks and so do the doctors. I already filed complaint against one doctor ready to next one. She says I have arthritis. The other one said carpal tunnel syndrome. Even thoe I was in the hospital for a week. Spinal tap was how they found GBS. The doctors want to say its e everything but what I have it’s a joke. Taking a break from the doctors only because I get so frustered and mad. I just think if I treated people that way when I was working I could take days or fired. So it’s so upsetting for me to have them say it’s something else. Then wants to run tubes in all my openings saying its my age. The test need to be done. NO they dont lol

Wow 20 miles :slight_smile: I was on the bowflex 2 minutes. That was enough. Before GBS I was on bowflex 30 Minutes plus.

Thanks. I work at it every day, and I've been at it about a year and a half now. Progress little by little... (sometimes it seems like a snail's pace, but you gotta keep pushing!)

So it’s ok to push. I was told while in the hospital not to push myself. I know when tired to rest. But there are days I feel better and want to push myself. Iam just scared it will flare up. And they now say I have stage three kidney disease but again not treating said see you in nov.

OK, when I said "keep pushing," I kind of meant it in the generic sense of not giving up. It is definitely possible to push yourself too hard, and then it can be bad. (I messed up once and passed out, fortunately only for a minute.) So be careful and watch your limits. But you do have to push to a certain extent, or your muscles simply will not get stronger. Sometimes when I get off my unicycle I can hardly stand up. But I know when enough is enough. Also, make sure you drink while you're exercising, that's important. It's real easy to get dehydrated, and then you get real weak, real fast.

Ok got it thank you. I live alone so not push :slight_smile:

I drunk plenty of water. I did 40 laps once in the pool. That was to much. I do 20 laps and then pedal in the deep end. :slight_smile: