6 Years Post GBS

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    • #117133
      johnor
      Participant

      Hi All,

      Long story which I will try to keep short. Diagnosed with GBS (AMAN/Axonal Type) in June 2013. Had complete paralysis of arms, legs, abdominal muscles with bowel and bladder loss. 7 Sessions of plasmapheresis followed by 6-7 months in a rehabilitation hospital. I would say today my recovery from a physical standpoint is about 95%.

      Residuals – Slight weakness in left ankle (No splint required). Normal gait when walking
      – Occasional electric shocks in my right bicep (take 75mg of Lyrica when flare up)
      – Very minor weakness of abductor muscles in both hands, noticeable during annual
      Neuro exam
      – On and off asymmetrical paresthesia throughout body. Happens out of the blue and can
      last days/weeks. Primarily in arms and legs.
      – Muscle Twitching, mostly in calf muscles of both legs.

      Present –

      10 days ago I had diarrhea for 24 hours as a result of some bad shrimp i ate. Since then I have had a heavy feeling in both legs and in the past 2 days the twitching in both calf muscles has become both noticeable and uncomfortable.

      Luckily I had an already scheduled appointment with my Neurologist this past Monday who gave me a full Neurological exam, everything seemed fine. He reassured me that it is very rare for GBS to reoccur as a result of such an illness. He did mention that as a result of GBS, the body can become hyper sensitive to any illness which occurs in later years.

      However I’m curious to hear from others who has had such an illness post GBS and whether you have experienced any neurological symptoms in the following weeks? This is really the first time I have been sick in years so I would be keen to hear from others and if they have experienced anything similar.

      Thanks!

    • #117174
      SuzyQ
      Participant

      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.

    • #117184
      Morany Trujillo
      Participant

      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.

    • #117265
      Richard Chlebecek
      Participant

      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.

    • #117333
      ELVIRA SEMIDEY
      Participant

      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

    • #117418
      johnor
      Participant

      Hi Elvira,

      Unfortunately there is specific timeframe for recovery with every single case being different depending on severity, GBS subtype, age and many other factors. Don’t give up hope, recovery for some people can be extremely slow and can take years to get back to something normal. There is a lot of information on line which can help you with better understanding the condition and timeframe.

      Sending best wishes to your brother.

    • #117419
      Jim-LA
      Moderator

      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.

    • #117422
      Fred Martin
      Participant

      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!

    • #117425
      Jim-LA
      Moderator

      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.

    • #117430
      mw17
      Participant

      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!

    • #117452
      ELVIRA SEMIDEY
      Participant

      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,

    • #117453
      Fred Martin
      Participant

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

    • #117454
      Jim-LA
      Moderator

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

      Best GBS Doctor in USA?

      2020 Conferences

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