Hi, I contracted GBS in June also. I had a very mild case, so I don't know if I can be of any help.

Hi NYNancy,
They say I have a mild case too. From the waist down. I too feel like I get better and then my legs feel like they are getting worse. Do your legs feel like that are swollen and very tight? Mine do, they are not swollen. At the beginning they felt like they were wrapped in bubble wrap, but that has gotten better. I can walk on my own now, but have to be careful as my balance isn't the best. Thanks for replying and hope we can compare what is happening with this "GBS". Have a great day, Elaine

Hi Elaine, I'm glad to hear you're doing pretty well. I've read it can take up to three years to recover. I had numbness, weakness and pain from the top of my legs down. It also effected my entire upper back and my fingertips. I woke up last May 26th and couldn't walk right. I don't have to tell you how scary that was. I waited 3 days hoping it would improve before I finally called the doctor. 4 different doctors, 4 different MRI's and almost 2 weeks later I was finally admitted to the hospital for a spinal tap and 5 days of IVIG treatments. When I left the hospital I was walking the same as when I was admitted. But I could manage if I was holding on to something. I had a important trip to see my son get his Navy wings a week after I was discharged so I planned to start PT after that. I was very motativated to get well, don't know if that made the difference, but by the time I took the trip I was walking pretty well. I did need the wheelchair, but just for the airports. When I returned I realized I didn't need PT. The only problems I still have is the bottom of the soles of my feet feel a little like bubble wrap. When I have shoes on it feels like my socks are bunched up under the soles of my feet, but they're not, My toes, when I squeeze them, especially on one foot, feel like there's a stick under them, weird?! My balance came back right away too, I'd say it's not exactly what it was, but almost. I think my legs are also not quite as strong as they were, but close. The bottom of my legs do sometimes feel a little swollen but they aren't. This is often a horrible illness. I feel so bad reading some of the posts here. Am very grateful I have such a mild case. It's nice to here from someone who wasn't so devastated by GBS. Tell me more about your story. Hope you're having a good day, Nancy

Morning Nancy,
Yes this whole deal has been very scary. I agree that I hesitated to respond to any support groups after reading about how terrible others had been stricken with GBS.

I started with tingling under my nails on my left hand. It felt like I had dirt under my nails. The next morning, Friday, June 6th, when I got up, my walk was not right. I couldn't put my finger on what was wrong but I didn't feel good. I went to the ER, walked in and had tests run, the Dr said he didn't know what I had but it wasn't life threatening, go home and call the neurologist on Monday. He also told me, if he got me out before 4 pm he won't have to pass this "case" on the next dr. (nice, huh?) Saturday morning, I was having trouble walking at all, told my husband, if I waited until Monday, I knew I would be much worse. Called the neurologist , who told me to go IMMEDIATELY to the ER and he would call them with the tests he wanted done. Had to get in a wheelchair to get to ER. I was very lucky that he had seen a case of GBS and started me on IVIG right away. I was in the hospital until June 27th, 13 of those days were at rehab, which helped me tremendously. I had 5 bottles of IVIG. I too have been very aggressive in getting myself back to "normal". I started PT (outpatient), massage, acupuncture, reiki, yoga, reflexology and chiropractor. I am walking, but if I turn quickly or close my eyes my balance is off.

Each day seems different in the feelings in my legs and up the small of my back. When I sit, it feels like I am sitting on balls or lumps, do you? I also have the same feelings by my toes as you. I told someone it felt like they were in a tube with my toes hanging out. Also, my toes on my right foot feel like there are no bones. My left leg is better than my right.

Shoes, oh yes, I hear ya. Especially my right foot. Once it gets used to it seems ok, but when I first put them on,,, bunched up socks...ugh!

So that is pretty much my story. I am suppose to have surgery and I'm very concerned about it causing this ugly GBS to rear it head again. Again, because they know so little about this, I don't think anyone can answer question for me.

Please do not hesitate to ask me questions. I am so excited just to contact someone who knows what I'm talking about. People just don't understand.

Congratulations on your son getting his Navy wings, you must be very proud!!! And so glad you could get there to see it happen

Hi Elane,
I sent you a message.
Nancy