GBS (Guillain-Barre Syndrome)

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?

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

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?

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

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.

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?

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?

Thanks. I'm a 3 time survivor of GBS in childhood (1957 the last of three bouts that left me with paralysis in hands and feet.) I've spent my life avoiding anything that might produce a 4th bout. I've just been diagnosed with multiple myeloma and two of the chemo meds prescribed look like they affect the nervous system in similar ways. I'm looking for info on how chemo meds given for multiple myeloma might affect the nervous system

I was admitted by ambulance to hospital (HCA Clear Lake, Webster, TX, just south of Houston) on February 27th when my arms and legs stopped working. I fell to the floor at home and couldn't get up. Pretty scary. It took them about 3 days to diagnose GBS and proscribed a 5 day course of IVIG. They confirmed the diagnosis with a spinal tap, fortunately my protein was fairly low. A day after the last IVIG I started inpatient rehab, just learning to stand. After another 5 days of increasingly aggressive OT and PT I was transferred out of the acute unit to the rehab wing. I was discharged 10 days later on the 19th March after 3 hours a day of inpatient rehab. I am now at home recovering nicely, yesterday I walked 3500 steps (with minimal help from a rollator) so my prognosis is good. I still have trouble with my feet (neuropathy?) but overall I think I got off very lightly. I hope this experience encourages other that this condition isn't always life changing.

I would recommend the doctors and treatment I received from HCA Clear Lake, Webster, TX

best wishes to all with this frightening condition.

Robert Cheetham

Hi, the link neuropathysupportnetwork.org isn't opening. I too have had gbs for 7 yrs and am frustrated with c Cleveland clinic saying it isn't gbs...that mayo clinic is a bunch of "hooey!" Looking for help too. Have started to walk again but.. swimming over 3,000 yards 4-5 /wk. Any suggestions?