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?

@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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I had GBS when I was 18 and now that I am 81, it seems every bone and joint in my body aches. Do you think there is a connection if you've had an autoimmune disease? Or, is this just one of the perils of getting older?

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@marylee38

I had GBS when I was 18 and now that I am 81, it seems every bone and joint in my body aches. Do you think there is a connection if you've had an autoimmune disease? Or, is this just one of the perils of getting older?

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Hi, @marylee38 – that sounds difficult with feeling as though every bone and joint in your body aches.

Are you inquiring about whether the GBS autoimmune disorder may be related to another autoimmune condition you have had, or are you wondering if the increasing body aches relate to having GBS plus another autoimmune condition?

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