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?

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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@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

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

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

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@casy

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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Anyone?

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Hi @casy,

I moved your discussion and combined it with this existing discussion in the Brain & Nervous system group on Connect. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed Guillain-Barre Syndrome (GBS).
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You may also be interested in this video about a patient with Guillain-Barre syndrome, who was treated successfully and with rehabilitation has full mobility back again: http://bit.ly/2oVULD6

I’m tagging @lindy1956 @cintam and also @lolla who posted about her daughter’s diagnosis in this discussion, "My daughter suffers from Guillain-Barre syndrome” http://mayocl.in/2nXTyKM

Here is some more information about Guillain-Barré syndrome, from Mayo Clinic: http://mayocl.in/1jEmzFG

@casy, could you share a bit more about yourself? When were you diagnosed? Do you know what type of GBS you might have?

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Living with the discomfort of residual symptoms including skin rash. Would love to discuss with anyone else who suffers

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@angelarisstrom

Living with the discomfort of residual symptoms including skin rash. Would love to discuss with anyone else who suffers

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Hello @angelarisstrom, welcome to Connect. You may notice that I moved your discussion and combined it with a discussion titled "GBS (Guillian Barre Syndrome). I did this so you could meet a recent member who was also hoping to Connect with someone who was diagnosed with GBS, @casy.

@angelarisstrom, what sort of remedies have you tried in order to address some of your symptoms? If you don't mind sharing, how long have you been diagnosed with GBS?

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Thankyou Justin. I was struck down with gbs in Dec 2013 after i had a mmr booster. I had ivig for 5 days with no significant effects. I also took lyrica, some endone for the nerve pain. Neither were well tolerated so I weaned myself off & I took panadeine, nurofen, & zoloft, and used to find relief with a bath, or heat/cool packs depending on climate. Now 6 years post dx, i have residual pain numbness & weakness in various places around my body which I still manage with the above drugs, & physical therapy to maintain strength.
I have a mystery rash which flares around my arms & neck that drives me crazy. The only things that help relieve it are diluted apple cider vinegar or aloe vera & cool compress.
I would definitely like to chat with @casy or anyone who also suffers residuals.
Also is there anyone else who has gbs from mmr?

Kind regards
Angela

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@angelarisstrom

Thankyou Justin. I was struck down with gbs in Dec 2013 after i had a mmr booster. I had ivig for 5 days with no significant effects. I also took lyrica, some endone for the nerve pain. Neither were well tolerated so I weaned myself off & I took panadeine, nurofen, & zoloft, and used to find relief with a bath, or heat/cool packs depending on climate. Now 6 years post dx, i have residual pain numbness & weakness in various places around my body which I still manage with the above drugs, & physical therapy to maintain strength.
I have a mystery rash which flares around my arms & neck that drives me crazy. The only things that help relieve it are diluted apple cider vinegar or aloe vera & cool compress.
I would definitely like to chat with @casy or anyone who also suffers residuals.
Also is there anyone else who has gbs from mmr?

Kind regards
Angela

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Hi, @angelarisstrom – I'd like to add my welcome to Mayo Clinic Connect. I'd also like to invite @lindy1956 @cintam and @lolla to return to this conversation and share any insights they may have about residual pain, numbness and weakness years post-diagnosis with GBS (Guillian Barre Syndrome). @suebreen54 also may have some thoughts.

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