1. < Brain & Nervous System

GBS (Guillain-Barre Syndrome)

Posted by sivai29 @sivai29, Aug 27, 2011

I am recovering from GBS, it's going on 11yrs. now. I still have faith in finding a way of standing and walking. Also to get my upper mobility back stronger. I am now seeking for help outside of Hawaii. I want to see if a clinic or other facilities can help me. Pls I am asking for more information and help? I still have faith and the will to become independent again. I want to give my daugther her life back. She has been my caregiver straight out of high school @ 18teen til now. I thank the LORD for all she has done for me. Now I want better for her and I. Is there a DR., SPECIALIST, THERAPIST or person that can help me?

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sibshrink | @sibshrink | Aug 27, 2011

There are excellent neuropathy centers with lots of experience in GBS.
The Neuropathy Association (neuropathy.org) lists resources and doctors, and The Peripheral Neuropathy Support Network (neuropathysupportnetwork.org is a web based support service that tries to provide advice and resources. In addition the GBS/CIDP Foundation International (http://www.gbs-cidp.org) lists centers of excellence. Even though GBS is a rare illness, there is help! If you contact neuropathysupportnetwork.org and send in a question tell Gene Richardson (who runs it) that Dr. Berman (me) told you to write--I am on his Board and Gene often sends out emails collecting information to help specific people. We are a nonprofit and our resources are free. Hang in there!--Scott

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4 replies
sivai29 | @sivai29 | Aug 27, 2011
In reply to @sibshrink "There are excellent neuropathy centers with lots of experience in GBS. The Neuropathy Association (neuropathy.org) lists..." + (show)
@sibshrink

There are excellent neuropathy centers with lots of experience in GBS.
The Neuropathy Association (neuropathy.org) lists resources and doctors, and The Peripheral Neuropathy Support Network (neuropathysupportnetwork.org is a web based support service that tries to provide advice and resources. In addition the GBS/CIDP Foundation International (http://www.gbs-cidp.org) lists centers of excellence. Even though GBS is a rare illness, there is help! If you contact neuropathysupportnetwork.org and send in a question tell Gene Richardson (who runs it) that Dr. Berman (me) told you to write--I am on his Board and Gene often sends out emails collecting information to help specific people. We are a nonprofit and our resources are free. Hang in there!--Scott

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Thank you, Dr. Berman for pointing me towards help and hope again. I will definitely write to him. God Bless you & have a wonderful weekend. Pat

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sibshrink | @sibshrink | Aug 27, 2011
In reply to @sibshrink "There are excellent neuropathy centers with lots of experience in GBS. The Neuropathy Association (neuropathy.org) lists..." + (show)
@sibshrink

There are excellent neuropathy centers with lots of experience in GBS.
The Neuropathy Association (neuropathy.org) lists resources and doctors, and The Peripheral Neuropathy Support Network (neuropathysupportnetwork.org is a web based support service that tries to provide advice and resources. In addition the GBS/CIDP Foundation International (http://www.gbs-cidp.org) lists centers of excellence. Even though GBS is a rare illness, there is help! If you contact neuropathysupportnetwork.org and send in a question tell Gene Richardson (who runs it) that Dr. Berman (me) told you to write--I am on his Board and Gene often sends out emails collecting information to help specific people. We are a nonprofit and our resources are free. Hang in there!--Scott

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Good luck Pat and I hope to hear that you were able to find some help!--Scott

REPLY
schraufh9 | @schraufh9 | Feb 14, 2012
In reply to @sibshrink "There are excellent neuropathy centers with lots of experience in GBS. The Neuropathy Association (neuropathy.org) lists..." + (show)
@sibshrink

There are excellent neuropathy centers with lots of experience in GBS.
The Neuropathy Association (neuropathy.org) lists resources and doctors, and The Peripheral Neuropathy Support Network (neuropathysupportnetwork.org is a web based support service that tries to provide advice and resources. In addition the GBS/CIDP Foundation International (http://www.gbs-cidp.org) lists centers of excellence. Even though GBS is a rare illness, there is help! If you contact neuropathysupportnetwork.org and send in a question tell Gene Richardson (who runs it) that Dr. Berman (me) told you to write--I am on his Board and Gene often sends out emails collecting information to help specific people. We are a nonprofit and our resources are free. Hang in there!--Scott

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Thank you for the reply. I have suffered from an illness my whole life. Now I have been diagnosed with a neurological pathology, and have relief from a constant suffering.

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brian t | @briant | Apr 13, 2012

I got gbs in nov with life threatening complications. 8 days in ICU ,30 bottles IVIG , and 3 times given last rites.Somehow survived it all. Both feet from knee down paralyzed. I am starting K- laser therapy next week. Maybe it would be an option for you also. It is a non surgical, drug free treatment option. I"ll keep you posted on progress.good luck!

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1 reply
sivai29 | @sivai29 | Apr 14, 2012
In reply to @briant "I got gbs in nov with life threatening complications. 8 days in ICU ,30 bottles IVIG..." + (show)
@briant

I got gbs in nov with life threatening complications. 8 days in ICU ,30 bottles IVIG , and 3 times given last rites.Somehow survived it all. Both feet from knee down paralyzed. I am starting K- laser therapy next week. Maybe it would be an option for you also. It is a non surgical, drug free treatment option. I"ll keep you posted on progress.good luck!

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Thank you, Brian I am so, interested in your new journey. I am willing to fly out and try it myself. If it will bring back the use of my hands and help me walk again. I'm in and all for it, 11yrs. with gbs still seeking answers. Therapists and Dr.'s who would help me restore my strenght. I've never given up hope or faith in my long journey. Where there's a will, There's a way. God Bess you and Goodluck!!! Pat in honolulu, hawaii. My prayers are with you.

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okieborn55 | @okieborn55 | Apr 12, 2013

My husband has just been dx'd with GBS & it seems to be an ongoing nightmare. He went into the hospital to have a fistula in his brain repaired on April 26, 2013 & has been in ICU 3 days, hospital room 6 days (with 5 days IVIg) & is now in an inpatient rehabilitative facility. He is so depressed & the doctors don't seem to be too sure of this dx. He had a spinal tap & the protien in his spine was high. We too are looking for answers & help.

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uriegas | @uriegas | Mar 20, 2016

Hello, on january 2015, my dad woke up with Guillian barre syndrome. The<br />
doctors told us he would never be able to move. Now he moves alot. He has a<br />
tract it helps him breath. Recently, the doctors told us that the guillian<br />
barre syndrome did its damage n now it is MDR Kleibsiella. My dad is so<br />
skinny, so drained but he has a strong will because he moves alot. He wants<br />
n tries to get up. I was wondering can we use stem cells to help reverse<br />
his condition. Please respond to me.<br />

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 10, 2018
In reply to @casy "Anyone?" + (show)
@casy

Anyone?

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Hello @casy, welcome to Connect. There are several older discussions on Guillain-Barre Syndrome (GBS) where some of the members may still be active. I'm tagging our moderator @kanaazpereira to see if we should move your post to one of the discussions so you will have more visibility and can meet other members who have discussed GBS.

Groups > Brain & Nervous System > GBS (Guillain-Barre Syndrome)
-- https://connect.mayoclinic.org/discussion/gbs-guillian-barre-syndrome/

Groups > Brain & Nervous System > My daughter suffers from Guillain-Barre syndrome
-- https://connect.mayoclinic.org/discussion/my-daughter-suffers-from-guillan-barre-syndrome-she-is-recovered-but-her-legs/

There is also a discussion from 2011 that has a YouTube video of a victim of Guillain-Barre syndrome and her story of sickness and triumph.
-- https://connect.mayoclinic.org/discussion/guillain-barre-syndrome-mayo-clinic/

@casy do you have any questions you are trying to get answered?

John

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