New to the GBS community with questions

Hi Mike and welcome!

I had the “band” thing too. I thought there was something wrong in my stomach, but later realized it was the numbness in my belly that gave me the sensation. In my case, I believe I ate something that was infected in some way and triggered the GBS. My numbness started in my belly and went up and down from there, not typical. It took several weeks before the “band” feeling began to lessen and several months for it to go away.

Hang in there and you will gradually improve. Don’t be surprised if you still have residuals a year or more out, this is a tough disease to deal with, especially if there is Myelin damage.

If you relapse, get ~3 days of Plasma Exchange followed by IVIg/SCIg. That should get your recovery back on track. I wish I had know that when I was initially stricken.

I wish you a quick recovery!

I also had the band. Mine was (and still is but much better now) around my ribs/diaphragm and made breathing difficult and coughing impossible. I called it my boa constrictor. 🙂

I think it’s pretty common. It does get better with time. I’m now 3 1/2 years past my GBS diagnosis and it is finally almost not noticeable at all.

My case was pretty severe, so you may improve much faster. I was also 57 when it hit me.

Welcome to the forum, by the way!

Hi I am Rose and have recently been diagnosed with GBS. I am currently on medication for Rumatiod Arthritis for the past 10 years and Ostreo Arthritis. I am having major problems with my legs hips and pelvis. The pain never leaves me. My right leg is partially numb around my ankle and foot. It’s so irritating!! And feels like I am walking on marbles. I have sensation under up part of my foot. I was in hospital where I was on the drp of polygam for a week. I don’t understand what is happening to me. I am also 60 years old and scared. Please can someone enlighten me on this!! Yes I also have tummy pains but not major but me legs I am so worried about. Thanks so.

Hi Mike.
Thanks sooooo much for replying. Everyone I ask know nothing about GBS. The doctor has not explained anything to me only that I have to wait for the polygam to kick in. He said once the meds are in my system it takes 2 to 3 months to take effect because it’s working in my system all the time. My legs and knee’s are killing me and the top of my legs are very swollen. If I stand up it kills me and my knees can’t take it. I went to physico and they told me that it is not my knees it is my hips. I am so co fused. I can’t seem to separate the Ra between GBS
THANK YOU SO VERY MUCH!!!

Thanks so much ? Mike!! Will let you guys know when I know. The only thing I am certain of is my leg going dead. Take care and bless you xxx

I also had the strange feeling of walking on marbles or pockets of air. It went away first but after about 3-5 weeks for me. I would have moments where it felt like it was getting better and then it was just kidding and came back. It seemed to start with my legs and up my body, then when it was going away it used the same path.

The first few months were hard on my mind. It played a lot of tricks on me. If it was dark or I couldn’t see my limbs, my mind would make me think they are positioned in a way they were not. Sometimes when I was resting, it would make me feel like I was all twisted, but when I look down my body was just laying there like normal.

I just wish I was one of the stories that I got better after a few months. After 5 years, I still have the chest tightening feeling, muscle weakness when being active, and numbness in my arms and hands.
Peter

For me, it comes and goes in my thighs if I’m walking a lot or using my legs in some light cardio. But it’s more like spotty patches versus full on starting all over again.

5 years, I’ve just dealt with having bad days. Lots of them. If my body or hands get too painful, I’ll take a two days off from work and put myself on bed rest, including no video games. That really seems to help.

Can gbs come back

GBS can return as RGBS or in the chronic form of CIDP. There are other peripheral neuropathies/variants too that are similar. Please see the following publication for more info:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/OverviewENG.pdf

I am so grateful to have found this site. I’m newly dx. Released from hospital on March 9, 2016. I have spent 4 weeks in bed and in pain. Last Friday I got this severe pain under my left breast that radiated to the back in my ribs area. It is so tight and painful. Hurts on inspiration and expiration. Can only lay on my back as the pain is so bad if I try to lay on either side. Unable to raise up without the severe pain! So glad to hear this is normal but I pray that the pain lessens. I thought perhaps blood clot or pleurisy. It has lessened a bit pain in left side back rib area. I was paralyzed from the waist down in the hospital but the IVIG worked thankfully. I pray that I can recover by the end of May so I don’t lose my job! So scared and sad! HUGS to all dealing with this awful syndrome.

Good luck Laura, hope you have recovered enough to have kept your job!

Thank you! I am doing better but it is so slow. Walking with a quad cane nowhen and the pain has lessened thankfully! I will not be able to return to work by June 3rd. My husband has terminal cancer and we received bad news last week that all cancer has growth and multiple new cancer. He has rapidly declined in the past few weeks. Asking any prayer warriors out there to please pray for my husband Marty! Wishing you all a peaceful day!