Guillain-Barré Syndrome (GBS) Support Group

Sorry to hear you have the chronic version. Having it only once is bad enough.

I received IVIG treatments starting the day after my diagnosis of having GBS was ventured. The docs weren't certain of the diagnosis until later, but they felt that immediate infusions of IVIG would be the best treatment. In my case it was 4 infusions over the course of 4 days to shock my system back to some sort of normalcy. It did seem to arrest the progress of the disease.

The only treatents since then have been in the form of physical therapy and lots of vitamins, fiber, and omerga 3 compounds.

Hi Lesa,

I hope that the infusions are proving helpful, and that they'll make a positive contribution toward your wellness. I was also administerd IVIG while hospitalized with GBS, and feel certain that it helped turn things around for me, and, gratefully, I haven't had need since. 18 months later I'm definitely still working toward complete recovery, though, and so the majority of my energy remains focused on efforts to get back to a more normal life. I think that might be one of the reasons the group isn't more active... for me, simple daily life activities can seem so demanding that checking in here with any frequency is currently an impossibility. I do agree, though, that it's a resource with great potential, and I also keep a hopeful thought that it will build into a bigger network -- perhaps it'll evolve that way naturally as more of us become strong enough to help. Meantime, I hope all of the info you need is finding you, and I'm sending tons of encouragement. All best...

Thank you both for replying. I spent six months rehabbing after my first bout with GBS. They caught mine early and immediately started treatment with IVIG. Mine progressed waist high, and I lost all sense of balance. I learned to walk again during my rehab and returned to work. My relapse occurred several years later. Since that relapse, the attacks are chronic.


I know many people in this group are working hard on their rehabilitation. I'm hoping that this group can be a place of support for them. When I first joined DS, two years ago, there were only six members in the GBS group. I communicate with several people in rehab centers now and know there is limited computer access many times. I know sometimes people here have others typing for them.

Having a positive attitude is so important to recovery! Physical therapy can be difficult, and progress is sometimes slow. I've heard that GBS stands for" getting better slowly". We can support and encourage each other through it though!

Hi,

I commend you for having such a great attitude while you are dealing with this. I am currently dealing with the residuals from my recent stint with GBS. Once diagnosed, after 2 days of tests in the hospital, i began 5 days of the IVIG treatment which helped me enough for my doc to release me from the hospital. Since then (December 08) I have been taking Neurontin 3-4 times daily to help manage the tingly, vibrating feeling i still have all over. The doctors were def not exaggerating when they said the healing process is very slow and long! It is comforting to know that others understand what its like dealing with these symptoms on a daily basis. I wish you well :-)