AnonymousJune 9, 2006 at 9:57 pm
Hi, I’m new here but have a vast knowledge of GBS due to my beautiful 23 year old daughter’s experience with GBS 3 1/2 years ago. She was diagnosed with GBS after a week after mild 3 day “flu”. She stabilized after approximately 2 weeks and was then transferred to a major rehabilitation hospital (ranked 8th in the US). Unfortunately, the disease process had not yet reached its nadir and she began to regress. She told her doctors she could not breathe and could not swallow and they ignored her and refused to intubate her (and told the nurses that she was doing it all for attention and was a ‘psyche’ case). Subsequently her chest muscles collapsed, she went into respiratory arrest (as I was there with her getting her ready to be transferred to another hospital) was then intubated and later trached. She is now home, in a minimally conscious state. My advice is to trust your own instints. Always get a second opinion. If you think something isn’t right, you are probably right. Doctors can be arrogant and ignorant. Thanks for letting me speak.
AnonymousJune 9, 2006 at 11:24 pm
Hi Kerbear52, i am soo sorry your daughter had to go through all that suffering, you also. i can’t imagine how you must feel. feel free to vent anytime, i am not shocked that your daughter was told or treated that way.
i think drs that can’t do their job in all ways, shouldn’t be allowed to care for people in anyway or place, especially when it comes to serious cases like your daughters’. just curious, what did the dr say after she went into respiratory distress? did the hospital personnel take responsibility for the mistake they all made? i have found that if the patient doesn’t show text book examples of a particular illness, then the drs are quick to say its a psych case. you are right as far as listening to intuition, that is what i believe in. your daughter is fortunate that you were there with her in her time of need. my prayers and thoughts are with you and your daughter. take care.
AnonymousJune 10, 2006 at 7:52 am
I woke up one day, my fingers were tingling, and as the morning progressed I had difficulty in walking. Around noon time I went to the hospital emergency room and the doctor, after examining me, told me to “go home, eat a banana and everything will be fine.” As the day progressed I felt worse, and went to bed at 8 pm (normally I stay up until 11 pm). At midnight I woke up to go to the bathroom, and fell onto the floor completely paralyzed.
Your comment “My advice is to trust your own instints. Always get a second opinion.” is right on. That is what I should have done. If I had gotten the ivig treatment earlier, perhaps I would not ended up coming down with a severe case of GBS, although no one really knows if that would have helped. After spending a year in the hospital/nursing home recovering from GBS, I also agree with your other comment “Doctors can be arrogant and ignorant.” I had two independent doctors tell me the same thing while I was recovering, that I would never be able to walk. After 3 years of the initial onset, I am walking with a cane and my goal is to be back on the golf course next year.
AnonymousJune 10, 2006 at 8:07 am
This is one place where you always have the right to vent and will find others who will be interested and helpful. Welcome to our family of GBS victims and care givers. I am sorry to hear this story of doctors not talking the appropriate attitude and offering even normal care for those with GBS or anything else for that matter. Using the care I received as a standard the doctors attending your daughter were way below the standard.
Thanks for sharing with us the the importance of second opinions. We all need to use that when we are not getting results, tests and care we know we should.
AnonymousJune 10, 2006 at 1:08 pm
Sorry that you had to deal with such poor medical treatment–and yes, you are absolutely right. Many of us who use this forum have had to fight with physicians and prove that we are telling the truth. Sadly, this is a very common occurrence. I was treated like a criminal who wanted to use the Social Security/Disability system and just wanted to get out of working. When I mentioned that it was the tetanus shot that caused my symptoms to my first neurologist (a real jerk), he yelled at me and stormed out of the room. That was really mature! We have the right to fire a physician who treats us badly. I certainly did and that is exactly how I stated it: “Your fired!!” Donald Trump would have been proud of me. :rolleyes:
AnonymousJune 10, 2006 at 2:23 pm
I am so sorry that your daughter had to endure the stupidity and arrogance of those Drs. Your daughter’s story sounds familar, did you post this on our old forums when she first got sick? I remember a father posting this same story.
No need to apologize for venting, we all understand. Whenever you need to rant and rave to get all this crap off your chest, we’re hear to listen and give you emotional support.
I will keep your daughter in my prayers.
AnonymousJune 12, 2006 at 9:52 am
Thank you for sharing your story with us, and welcome to the forum.
I think that so many of us here have stories about incompetent doctors, thankfully some not as awful as your experience. It makes me wonder at times the real reason some people decide to become doctors nowadays. Gone are the days when, I feel, that doctors are held in the high esteem they were a couple of decades ago, and it is such a shame. You are so right about trusting your instincts, its just so difficult to fight for what you believe when there is someone around who has a god complex, and honestly believes that they are far superior than you are.
My thoughts are with you, your family and your daughter, and look forward to further rants. 🙂
AnonymousJune 12, 2006 at 10:58 pm
Welcome to this website. Feel free to vent as many of us have in the past. It is terrible how your daughter was treated. When I was sent from my country hospital (in South Australia) in an ambulance to a hospital in the city I was sent home as the doctor said he could find nothing wrong with me. I had numbness and pins and needles in my arms, legs, face and mouth. I was vomiting and could not stop and they sent me home. We should of demanded a second opinion but we didn’t. I would in the future if needed.
Thanks for sharing your story and feel free to post as many times as you like. Send my best wishes to your daughter. By the way what is her name?
AnonymousJune 13, 2006 at 3:31 pm
I think we can almost all share a story of how the first, second and even thirs diagnosis was NOT GBS, but something more simple, something easier for doctors to assume you have, without completely listening or understanding the patient.
When my father went into the hospital, he had many tests, after waiting a week with symptoms, the doctors still didn’t have the blood tests back yet. A visit to another doctor came up with inadequate test results as well, and left the doctor saying “I don’t know what’s wrong with you – you’ve stumpted me.” At the time, my father was bound to a wheelchair with no use of his legs, and this doctor let him go home with an “I don’t know…” It was over two weeks from first symptoms until my father was correctly disgnosed – 4 days after I researched my fathers symptoms online and came up with a short list of possibilities, including GBS.
The list of symptoms my father gave both doctors was textbook (and pretty obvious if you ask me) GBS. It’s just a shame that doctors don’t thoroughly examine their patients more. GBS symptoms should send a patient to be immediately hospitalized, and referred to a neurological specialist.
Good luck to you & your daughter – we’re all pulling for her.
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