Guillain-Barré Syndrome (GBS) Support Group

Guillain-Barré syndrome (GBS), is an acquired immune-mediated inflammatory disorder of the peripheral nervous system (i.e. not the brain or spinal cord). It is suggested that it is an autoimmune disease, in which the sufferer's immune system is triggered into damaging the nerve covering. Many cases developed in people who received the 1976 swine flu vaccine.

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Brain & Nervous System
/ Guillain-Barré Syndrome (GBS) Support Group

Supportive Care for Guillain-Barre Syndrome (GBS)

AdminTeamDS
TeamDS
Tell us about your personal experience with Supportive Care as a treatment: Has it worked? Have you had any issues? Any recommendations or tips?
deleted_user
deleted_user
I would like some advice on how to get any kind of help. I have not received any kind of treatment since I was hospitalized 12 months ago followed by 3 months PT. I am still wheel chair bound, no insurance, and my husband is also disabled. We have 2 children still at home ages 14 and 5. I am gaining weight rapidly and do not know if it is from medication. Does neurontin cause weight gain? I feel so frustrated.
Laura
Lesa
Lesa
Laura,
Can you get Medicaid?They told me to apply for it at my local hospital-said it would go through faster.We also have Community Long Term Care here in S.C.They put me on the waiting list for it when I applied for Medicaid.They built my ramp and sent an aide out who helps me 4 days a week.I have in home nursing care and was getting PT here too.Have you filed for your Disability?I did mine myself and never left the house to do it, other than going to my Drs.They were very nice at Social Security.
I take neurontin too,and have since 2001.I have to watch my weight but think a lot of mine is from not being able to exercise.Lyrica does cause weight gain I know.
deleted_user
deleted_user
If just belonging to Daily Strength is Supportive Care, then YES, it is helping me. I enjoy visiting and writing back and forth with people that share the same frustrations and pain that I do. It feels good to know that there really are people out there that know exactly how you feel, when the outside world just doesn't seem to get it, since 'you look so good' As far as any treatments after hospitalization and nursing home care, no there wasn't any treatments or medicines for me either. I did have therapy in the home until my insurance ran out but I just did the excercises they gave me and that was it. I am weheelchair bund as I can't walk at all. Now I go to a place that is connected with a nursing home in town here, it is a wellness center that allows me to use machines that are suitable for my disability. I try to strengthen myself in the arms expecially since I use them for transfering and for wheeling myself around in my wheelchair! As gaining weight, I KNOW why I'm gaining it. I still eat the same as before the GB, but I am not able to move that much to wear it off. I have gained about 20 pound's in the almost 3 years since I was stricken with GB. Before that I was very active, walking a LOT, golfing, fishing, working as a CNA, too! Huge change in my life style, like everyone else! Carol