Welcome to the forum, it was a lifesaver for me at my worst. I can identify so much with what you have written, even though I am 4 1/2 years post GBS/CIDP. I also have the ringing in the ears, but it does seem to come & go now. I know what you mean about the tightness under your abdomen, it feels like a piece of rope around that area, that someone is tightening. Here we call it the band, & many of us have had it. I believe it is caused by a band of nerves in that area; but after two years I rarely got it anymore.

About driving, I would not report anything to the DMV. I did, & ended up having to retake both the written test & the driving test. When you feel ready, have someone take you out to some back roads & see how it goes. When you feel ready to drive, just start driving. I got my license back in Feb of 2005 & drive with AFOs & numb feet, but I do just fine. Also, my hands were very bad for about 2 1/2 years (could not wipe myself, tie shoes, do buttons, zippers, etc.) but now I have about 80% useage back. They healed on their own, so I would not recommend surgery on them.

Please post any time you have a question, as there are so many on this forum that can help you. The support here is wonderful.
Blessings, Pam

suzanne. thanks for all of your info. it seems we have quite a bit in common as far as residuals. my case was hit hard though while working as a full charge bookkeeper in a health club. in a matter of a few days i was just about completely paralyzed in jefferson hospital in philadelphia. now, after a long period of physical therapy, occupational therapy, two years of i.v.i.g and a year of chemotherapy, i’m now left asleep from the nose down. my balance is off and i walk with a cane and use a wheelechair for long distances. needless to say, i was forced to go on permanent disability. this was very hard for me to stop working. i sometimes feel useless and not contributing my fair share to the house hold. my husband has been phenominal through this whole ordeal. at the beginning he had to feed me, bathe me, dress me and even deal with that time of the month for me. thank god i just had a hysterectomy, so that’s a phase of my life i can leave behind. i also have very supportive friends and family. i too am on effexor (the miracle drug) and xanax to help me sleep. i get fatiged during the day even if i have a good nights sleep which is far and few between. as far as the gbs affecting my liver; any autoimmune disease can attack the liver. it’s not uncommon for this to happen. guess i was one of the lucky ones. i do keep a positive attitude and try to talk to first time chemo. patients to let them know what the medicine does, how they’re going to feel, when they’re going to feel it, etc. it seems to help the patients when they know, i too have been through a year of chemo. sorry i’m rambling, but it’s so nice to talk to someone who knows how i feel. so where in northern virginia are you from? i have relatives in mannassis (sp?), west virginia and crisfield maryland. i didn’t make it to the crab derby this year in crisfield. please keep in touch. i enjoy talking with you. you’re uplifting. stay well.

My personal experience is that about 25 years post GBS, severe muscle cramps and pain, and fatigue gradually impacted my work, ability to walk, and the ADLs of living. I’m now 33 years post GBS. Neurontin and/or motrin helps. Sessions with a pain specialist, yoga, water exercise and learning how to pace myself all helped minimize the need for drugs and improve my quality of life. I find that the pain and cramps return when I overexert the muscles, and this is very easy to do. As in 1971 I didn’t have treatment (nonexistent at the time) other than preserving my life in ICU with about 3-4 months of hospitalization, I was discharged without therapy in a complete paralytic sack of potatoes condition. Gradually, my ability to stand, walk and return to a normal life returned. However, the residual damage for me was weaker muscles, cramps that would contort my feet for an hour or more at a time, and a strange vibrating sensation running up and down my arms, legs and spine, when overly fatigued. Back pain from muscle spasms is another challenge. Double vision and print that fades off the page when my eyes are overused, is just something I live with. The running/vibrating sensations are irritating and combined with pain, wear me down, but resting and pacing better works, and then neurontin can be added, and motrin (in this order) if nothing else is working. Massage has been a tricky option as it can overfatigue the muscles and can easily cause spasms if the therapist isn’t gentle enough for my crazy muscles. Chiropractic adjustments minimize pain levels.

For people newly infected with GBS today, treatments prevent severe damage and promote quicker recoveries than what was possible in the early 70’s and 80’s, so please don’t stress out if you are reading this, thinking it might affect you this way. People contracting GBS today are also given rehabilitation therapy by OTs and PTs, which is additionally helpful.

Dr Richard Bruno of the Post-Polio Institute has great ideas for dealing with this type of post-illness challenge, including dietary adjustments such as eating 5 times a day in small protein bursts. He faxed me his dietary suggestions and they are super easy to prepare and this philosophy really works. Best wishes.

My personal experience is that about 25 years post GBS, severe muscle cramps and pain, and fatigue gradually impacted my work, ability to walk, and the ADLs of living. Neurontin and/or motrin helps. Sessions with a pain specialist, yoga, water exercise and learning how to pace myself all helped. I find that the pain and cramps return when I overexert the muscles, and this is very easy to do. As I didn’t have treatment (nonexistent at the time) other than preserving my life in ICU with about 3-4 months of hospitalization, I was discharged without therapy in a complete paralytic condition. Gradually, my ability to stand, walk and return to a normal life returned. However, the residual damage for me was weaker muscles, cramps that would contort my feet, and a strange vibrating sensation running up and down my arms, legs and spine, particularly when over fatigued. My eyes were effected and double vision and print that fades off the page when fatigued is just something I now live with. For people newly infected with GBS today, treatments prevent the same level of damage and promotes quicker recoveries than what was possible in the early 70’s and 80’s. People contracting GBS today are given rehabilitatioin and presumed to be capable of returning to their pre-illness states. The running/vibrating sensations are irritating and combined with pain, wears me down. Rest and pacing is the only way around this. Dr Richard Bruno of the Post-Polio Institute has great ideas for dealing with this type of post-illness challenge, including dietary adjustments such as eating 5 times a day, small protein bursts. He faxed me his dietary suggestions and they are super easy to prepare and this philosophy really works. Best wishes.