Urgent. GBS misdiagnosis
September 14, 2014 at 2:06 pm
My partner (41, male) is in a coma/state of complete paralysis and has been diagnosed with a severe case of GBS.
He also has multi-organ failure, his kidneys failed likely as a result of severe dehydration from what began as gastro two weeks ago on Monday Sept 1, 2014. He was vomiting and could not keep food or fluids down and passed his last fluid and feces on Tuesday Sept 2 though I was not informed until the Friday night, Sept 5. We tried to rehydrate him but to no avail and his deteriorating strength only got worse over night. I finally convinced him to make a final exerted effort to go to hospital using the last of his strength where they discovered a few things.
His liver was also failing. His unfiltered blood was let free to flow to his brain and this was initially thought to be the cause of his lower lip and left eyelid becoming paralysed. Over the ensuing 18 hours or so his condition deteriorated rapidly as did his ability to control his own behaviour. He kept trying to pull the tubes out of his neck that were being used to run his blood through dialysis so he was put into an induced coma on the Sunday night 6 days after first showing symptoms of being unwell and a week ago from now almost to the hour.
Late on the Wednesday night of Sept 10 the nurse informed us that he had been diagnosed with GBS and he has since become worse. In intensive care, and no longer sedated, he does not wake up. He does not respond in any way to stimuli, has no reflexes regardless of what pain the doctors may try to inflict upon him to try and get some reaction. He is being kept alive only by an artificial respiration machine. He has had 7 treatments of plasmapheresis over the last 7 days and is showing no signs of recovery whatsoever. The doctors have warned his family and myself that there is a strong possibility he will not make it through this but that is an option I cannot accept.
The doctors are not completely certain it’s GBS and have diagnosed his condition as Guillain Barré only because they cannot find any other explanation. But even with GBS in mind, the do not understand the relationship of his multi-organ failure and will not treat him for anything else as stabbing in the dark could cause more harm than good.
Is this a familiar scenario for anyone out there? Has anyone been this severely touched by GBS and made a recovery? Can anyone please offer me some advice about what I should be demanding of the doctors etc.? I am at my wits end and totally exhausted. At present there is very little hope in my heart and I would hate for him to sense this while I spend as much time keeping him company as I am able.
Thanks for taking the time to read this for my partners sake. He has so much more life left in him and only two weeks ago so much time to live it and now it feels like this time is coming to a premature end. It is so sad…
September 14, 2014 at 7:16 pm
Hi and Im so sorry to read your story, I know it is hard and I walk woman through this few years ago, her husband did not make it through, his body gave up she was pregnant. He was diagnosed with GBS after all kind of other treatment, his body shut down one organ after other. I saw him once and he got angry he could not talk he was paralyzed all over from head to toe. I know it is not what you wanted to hear or read, I try to fight with this women to get him more treatment but the doctors said it was all done and there was no change he would come back. But I say always if there is live then it is change, we have seen lot of miracles here so dont give up sometimes the unthinkable can happen. lots of xoxoxxox Helga from Iceland
September 14, 2014 at 8:34 pm
Only neurologisys can diagnose GBS — you can’t get a better diagnosis here. If they believe it is GBS, they must have some reason for it. Did he have the spinal fluid test? Was it consistent with GBS?
If the doctors are unsure of the diagnosis, this is not unusual. Neuropathies are difficult to diagnose, as there is a lot of variation. That he has not yet responded to the plasma exchange treatments does not mean that it is not GBS. Recovery from GBS takes much longer than its development, and if this is GBS it is a severe case.
I have not heard of symptoms of vomiting and organ failure being associated with GBS, so it is understandable that the doctors are considering other possibilities. Have they considered pousoning?
If it is GBS, it is possible that a reasonably good recovery can be made from complete paralysis. But it also possible for GBS to be fatal. If it is not GBS, or if it is GBS with something else, then who knows? The doctors must try to figure it out, possibly with the assistance of consulting specialists.
I advise you knot to make demands of the doctors or the hospital. You are not in a position to be making demands, which will not help anyway. I suggest you ask them whether they have consulted with outside specialists to help with the diagnosis.
November 28, 2014 at 8:54 pm
I am so sorry you and your partner are going through this!
As GH asked…did they give your partner a spinal tap? (Lumbar puncture?) That is the only way to confirm GBS.
I’ve never heard of organ failure with this condition but I guess if he has a severe enough case, almost anything could happen.
The doctors have their jobs cut out for them. GBS is not easily diagnosed and definitely isn’t the first thing they think of, so trying to figure out if there is something else going on as well, that could take them some time.
My heart and prayers go out to you and your partner. I hope all improves and goes well.
December 29, 2014 at 7:40 pm
Hi, I just read your story. My heart ached for you. I would like to how things are going, and if there was a final diagnosis?
January 17, 2015 at 5:07 am
So, how goes it, Leeyoung? Has the situation changed?
February 3, 2015 at 11:15 pm
I had organ involvement and vomiting with GBS. My lumbar puncture was normal but I was still diagnosed since I had symmetrical paralysis. I was in the hospital for 4 months as it progressed extremely slow even with IVIG. My liver failed, enzymes were in the thousands and biopsy was normal. My kidneys began to fail as well. I constantly vomited anything put into my stomach, even with a feeding tube running at the slowest possible rate. At one point my throat was so weak that I had aspirated the vomit into my lungs and went into cardiac arrest. They have no explanation for my rare symptoms to this day.
This was 5 years ago. I’m alive and well but still suffer from unknown GI issues. I also have had issues with my heart like afib, tachycardia & bradycardia, and orthostatic hypotension, which is common with autonomic issues. GBS is different for everyone, that I know for sure. Hope all is well. Xx
February 5, 2015 at 5:43 am
I as well had a similar experience as LexieKy described. After full paralysis set in, and the doctors got two negatives with my spinal tap results, they diagnosed me via electro shock. By that time my kidneys were barely functioning and my liver was showing enzyme readings that were off the charts. When I began plasma treatment I was also put on numerous IVs of sodium sulfate which were almost unbearably painful. I couldn’t move or hardly speak for 12 days after the worst symptoms set in. At one point I was unable to open my eyes so when my family and friends who stayed by me wanted to speak to me they would open my eye lids for a few seconds to give me a glimpse of who was there. After day 12 I could blink, talk (very high pitched because my vocal chords were greatly effected) and barely move my finger tips. My enzymes normalized over the next month and after living in the hospital for 7 months and 14 days I left in a wheel chair. Now, after 2 years, with the help of orthotic leg braces, I’m walking with no walker or cane with full mobility in my upper body and minimal leg pain. GBS is a horrific experience but with the proper care and more importantly the constant support of loved ones, soon enough it just becomes a bad memory
March 30, 2015 at 8:51 am
Thank you all for your heart felt compassion for Richard and myself. It has been a long (yet quick) few months since I posted on the forum seeking help for our situation which ended up being utterly impossible – Richard died in hospital on November 3rd. He’d been taken off life support more than two days earlier. His heart stopped after being given fentanyl to apparently ease the discomfort of re-learning to breathe through his nose and mouth instead of the hole in his neck from his tracheotomy. Richard spent 8 weeks on the respirator, the first four of which everyone now believes Richard to have been ‘locked in’ before showing signs of awareness or movement. Ultimately, he passed away from being given end-of-life treatment decided on by the hospital for ailments that weren’t then and now never will be confirmed. These included Guillain-Barré Syndrome obviously, which the diagnosis kept being escalated from initially Miller Fisher, then acute motor axonal neuropathy (AMAN) to finally acute motor sensory axonal neuropathy (AMSAN), combined with a suspected cerebral vasculitis or one form or another of encephalitis and continued renal failure.
While he was ‘comatose’ Richard suffered a major internal haemorrhage from a small cut in an artery during a kidney biopsy where it was found that he had a septic kidney and the bleeding was not detected for at least 12 hours after which he was also diagnosed with sepsis and when he started showing signs of consciousness again, it became clear that he was suffering, at least temporarily, an amount of brain damage that they could not quantify. At four weeks of total paralysis, before he’d begun to move again, the hospital told us they were considering removing his life support measures. Richard started moving later that day. Two weeks later they stopped conducting any radiographic testing even though each test had shown at least marginal improvement in his brain activity, yet another two weeks later they discontinued renal dialysis and two days later removed his respirator and nasal gastric and intravenous tubes which were keeping him nourished, against my wishes. But Richard kept breathing. It was obviously difficult for him and required a lot of focus and effort but he kept going even though the hospital refused to reinstate his dialysis and gave him only a fraction of the nourishment he’d been previously receiving, even that I had to fight for. And then they gave him the fentanyl which stopped his heart.
None of what happened makes any sense to me. I struggle everyday to come to terms with his passing and what occurred at the hospital. I’m so confused. Can anyone tell me a similar story or even help me understand why it feels like the hospital were so quick to dismiss Richard as having any chance of survival. It’s taken me six months to collect myself to be able to write this and not break down, even still I am not sure that I have made any sense. For that I apologise. And for your thoughts and concern I am and will always be very thankful.
March 31, 2015 at 3:52 am
Sorry Leeyoung about your partner Richard. May God Lord grant you peace which surpasses all human understanding.
March 31, 2015 at 6:04 pm
I am very sorry to read this. I am in no position to judge the quality of care your partner received, but I know that meddical professionals, almost without exception, want to provide the very best treatment and care which is possible and they do not want to lose patients. I also know that while geat progress has been made in the treatment of GBS and in medicine generally, medicine is nevertheless not perfect. There are cases for which no treatment is enough. I hope you can put this tragedy into perspective and not try to assign blame where it is not warrented. We are all mortal. Thank you for sharing your experience here and may better fortune come to you from here on.
April 4, 2015 at 9:22 am
I am so very sorry to hear about Richard’s passing and what you have been going through. I’m afraid that I have no words of enlightenment for you. It sounds like the hospital was quick to dismiss him but I am no doctor and really shouldn’t judge that. As GH pointed out, medical professionals aren’t perfect and they don’t like to lose patients but still, Richard’s case sounds tragic. It may be cliche but the good news is, of course, is that he is no longer struggling and suffering.
My heart goes out to you. I hope that you are able to find solace somehow. As long as you remember Richard with love, he will live on through you. I know that sounds corny but I believe it. You’ll remember the good stuff, talk about him – share him with others. Over time, the pain will lessen but you will never forget him, no matter what or who comes into your life.
October 8, 2015 at 7:54 am
I’m sorry to hear this story and I hope that you and your family are coping well. For any type of misdiagnosis this website really helps, the experts will talk you through misdiagnosis and clear up any questions that you have. You will be entitled to compensation to help support your family moving forward.
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