6 Years Post GBS

Hi there, I’m not post-GBS yet, got it in March of this year. But your post is very informative and positive, so thank you.

Hi, I had GBS in 2017 and I feel every time I get sick and/or stressed, I get residuals. For example, I’ll feel tingly in my feet for a day or 2, or my hands. Sometimes it’s parts of my face, etc. Sometimes I feel tingly/numb in areas where I have not felt that before and it is really random. As far as heaviness in the legs, yes I have felt that too when I’m sick or right after. Muscle twitching not so often but I do get it in my biceps and calves and it is very annoying but doesn’t last long. What I do to keep calm when I get these symptoms is to prove to myself that I don’t have weakness, so I do some squats, planks, walk up stairs, and sort of take a baseline and make sure I’m able to do the same amount each day, it assures me there’s no increasing weakness.

My neurologist said if it is not persistent, not to worry about it. The thing is, after having had GBS is nearly impossible not to “worry”.

But yes, flare ups for me and very common and scary, I think they always will be.

I had a severe case of GBS 5 years ago. I experience many of the same residuals you have. Nerves seem to come and go at times (face tingles, hand tremors, etc.). I’ve learned to ignore most of it. I have not experienced an illness that brought on effects such as you described, but I could certainly see how something like that could happen. My closest example has been a sleep study where I stopped breathing 67 times per hour. Normal is 3-5. Neurologist says that GBS weakens the entire respiratory system and put me on a CPAC machine. I suspect the same weakness occurs throughout the body.

Hi Johnor:

Mi brother was diagnosed with GBS on February 2018 and spent 6 months in ICU with respiratory assistance (while that time he had physiotherapy)

He was discharged and in August 2018 and since then continues the therapies and care. He has recover very little movement and cant even stand or close his hands.

How long did it take you to recover? Is there any information you advice me to use to help his recovery?

Thanks,
Elvira

GBS is almost always a single event and does not return after its normal 4-6 week run. The recurrent form (RGBS) is very rare (1-3% incidence rate) but is not known to last much more than 9-12 months. If your condition has seen flare-ups after a year or more from onset of GBS, most Doctors would diagnose the condition as CIDP, or possibly one of its variants (AMAN, MMN, etc.).

For those who may have been diagnosed with AMAN, Please see the following thread:

Axonal Guillan Barre (AMAN)

CIDP can usually be distinguished from GBS/RGBS through the following key tests:
• Diminished or absent deep tendon reflexes.
• A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
• A Nerve Conduction Velocity Study that measures how well individual nerves can send an electrical signal from the spinal cord to the muscles.
• Complete Blood and urine tests.

I am starting my 3rd year with AMAN. In 2019 I had 7 IVIG infusions but I don’t think they helped at all. My history is as follows: while traveling in Spain in 2017(70 years old)I woke up one morning with a heaviness in my legs. That evening I fell down and couldn’t get up. ( no pain at all) my legs didn’t work. I was taken to a hospital in Spain and a neurologist on duty gave me a quick exam and started me on IVIG that evening. I didn’t know what GBS was! By the next day I lost the use of my arms and hands but my breathing remained stable. I spent two weeks in the Spanish hospital not understanding what was wrong with me. I assume I would wake up one morning and walkout. I had all my sensory nerves working, no pain at all. After two weeks they advise me to go back to the states, California. I went straight to a local hospital,(on a stretcher) where they did more tests and concluded that I had GBS as the Spanish doctored had noted. I spent three days in the hospital and then I was moved to a rehab clinic. Here they said I was hopeless and sent me home after 20 days. No PT. My insurance company, Kaiser, said they couldn’t do anything for me. Being on Medicare I changed insurance at the beginning of 2018 and begin getting in-home PT. Finally some hope and movement. As of January 2020 I can walk with lower leg braces and a cane, cannot do stairs and my hands are a mess. My question is this as good as it gets? My doctor keeps telling me to be patient. I’m 73 and running out of patience. I want to walk and use my hands like a normal person. Will my nerves ever regenerate? I’ve tried to stay positive these past 27 months but I am running out of gas!

If you have the axonal form of GBS (AMAN, or AMSAN) you should explore Rituximab treatments with your doctor and insurance company. You’ll learn a lot about Rituxan from our members including discussions on getting insurance companies to cover the drug. Please review the following forum topic threads:
https://forum.gbs-cidp.org/topic/rituximab
https://forum.gbs-cidp.org/topic/anemia-due-to-cidp/page/2
https://forum.gbs-cidp.org/topic/cidp-rituxan-treatment
https://forum.gbs-cidp.org/topic/i-got-some-rituxan-and

Typically, it takes around three years for the body to rebuild itself (as best it can) following GBS. Progress is slow because Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft. This is agonizingly gradual but there has been little that can be done to speed up the process, except for the very expensive and experimental HSCT stem cell transplant treatment.

Axonal damage, depending on severity, may not be something our bodies can easily reverse. Here are some articles that address what may be done to help Axonal damage:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5243173/
https://www.sciencedaily.com/releases/2017/03/170308131202.htm
https://en.wikipedia.org/wiki/Neuroregeneration

You are still in the regrowth stages following GBS/AMAN. You still have hope that many of the symptoms you are experiencing today may diminish or go away. Try to be positive about your future and don’t expect that all things will get back to pre-GBS levels.

I’m 73 and confined to a wheelchair, even though Rituximab did give me back some functionality.

Three years in June for me. Though I cannot claim to have actually had GBS. My symptoms were mild, so they avoided testing spinal fluid during the acute phase. I failed to present with the weakness that is typically the tell-tale sign neurologists look for. I never lost the ability to walk, though it was extremely difficult at the peak. Symptoms started after an adenovirus infection, just started feeling a malaise and tired after I had been feeling better following the infection, then an intense pain in my lower back, after which I noticed numbness and tingling in my legs, which moved to my arms, and finally face, which became mostly paralyzed. There was also bowel involvement, in that they were seemingly paralyzed for some time.

At this point, as a result of my GBS-like syndrome, I still experience transient paresthesia, particularly in my feet and lower legs. My top left foot is still slightly numb. Infrequently, I have stabbing nerve pain in my feet, that usually only lasts a few seconds. My ability to detect hot and cold sensations in a timely manner seems reduced in my hands – I tend to burn myself by accident when working with hot items.

After reading about some of the GBS cases on this site, I count myself VERY lucky. So I’m not complaining too much. Best wishes to everyone out there recovering from this sort of thing!

Update:
I just came back from visiting my brother in Venezuela. This month will be two years since he was affected with the syndrome with very little movement recovery.
In October 2019 I saw a Ted talk from doctor Terry Wahls about how she got out of Multiple Sclerosis by changing mainly her nutrition https://www.youtube.com/watch?v=KLjgBLwH3Wc . I got inspired and learned more about it, changes on diet, nutritional supplements and daily therapy along with good sleep habits, etc.
I am happy to report that my brother started on new diet and supplements at the end of November and he has shown an important change in terms of his energy and strength. He is now able to stand up with help and support on his knees and keep his weight body on his foot for brief time. He also started therapy in a pool and can at least do a few steps in the water. I am very hopeful that the changes directed to strengthen his immune system and reduce inflammation will allow him to achieve progress in the next few months.
I will post an update then.
Take care,

Thanks Jim for the info. I am thinking of going to see Dr. Lewis at Cedar Sinai. Do you know of him?

Hi Fred, Dr Lewis is my Dr. Please see the following posts:

Best GBS Doctor in USA?

2020 Conferences

I am 37 years post GBS and continue to experience residuals. They peak and wain. I do find they get worse when I’m tired or I physically over do activities. I have continual tingling, but the electric shocks, twitching, pins and needles throughout my extremities and face come and go.