Sent home from emerge with GBS

    • September 14, 2010 at 2:39 pm

      Hello all, I hope you are creeping towards feeling better.

      I have discussed this on a thread before. It’s about my initial experience with the emergency dept on the first Friday in June. I was at that point in a wheelchair, needing to hold onto walls, etc. to get around.

      The doctor that attended to me gave me a GBS diagnosis and sent me home. I was instructed to monitor my breathing and come back if it became serious. As well I was to follow up with medicine at a clinic that was not open until the following Monday. I could not get through to the clinic and they returned no calls. I of course was now fully schooled in GBS via ‘Dr. google” and was terrified awaiting what was described.

      By the following Wednesday, my mother and wife insisted that I be seen. At the same hospital and in the same condition as at emerg., I was declared a medical emergency. The doctor that attended me that day said that I never should have been sent home and should have started IVIG right away. That in turn did not come for another two days as they did MRI, spinal tap and took more blood than a donation would require.

      I feel as though I was not treated seriously and I bet there are a lot of you with a similar story. If GBS is not ‘big enough’ for recognition because no one with the mass-media on them have been stricken with it, should it not merit that emerg, doctors are aware? Has anyone had luck bringing attention to this?

    • Anonymous
      September 14, 2010 at 7:05 pm

      The first ER I went to – an hour away – when questioned by me, the doctor told me that they would not give me IVIG because I was still able to hold a cup. At that comment I knew she had No idea what GBS was and what IVIG was supposed to do for it. I could barely stand up. So I called my friends who had already left and begged them to come get me. While I waited, I was trying to figure out how I could get to a motel and stagger in.
      A few days later I was standing and just fell on my ankle so I had to go to the local ER. The so-called doctor had it Xrayed and told me to go home and not put any weight on it and see a bone doctor within three days. I told him I couldn’t stand, had GBS (my second time so I knew) and begged him to keep me there overnight if I needed a cast on it. Nope. A sweet nurse gave me these ice packs to put on it and a nasty nurse came along and pulled them out of the bag I had – screaming at the sweet nurse the whole time. My friend would not spend the night because his cat Tina might get lonely! Within the next week or so, I called both hospitals and explained what happened and they cancelled the amount I owed them that my insurance wouldn’t pick up…my co-pay.
      I think the only way one gets their attention, Guitar Guy, is to SUE. That keeps them on their toes…and I am a pacifist by nature. Perhaps we should all get to the media and get our message out. I personally use French POLIO…that works for me….I do not think it is a rare disease….I have met more people who know someone that had it. I even diagnosed a man at a flea market…..had all the symptoms….I didn’t even need to do a spinal tap!! His doctors couldn’t tell him what he had – but I could….sad, huh?
      I just don’t like invasive methods when they are not needed. Mark from New York wrote that his neurologist did not need to do that either. I applaud these doctors. IF it looks like a duck, …..
      Do you think that because it is a Syndrome….and they don’t know what causes it…..and they don’t have an Expensive pharmarceutical that we would have to take the rest of our lives$$$$…..they don’t care.
      I like the Oriental method where you pay a doctor if he keeps you well..when you get sick, he has failed……that is why I put $$ into my supplements….to stay ahead of the diseases and give the body all it needs to succeed.It is the body who does the healing….when we watch tv, sleep…the body is constantly working to keep us healthy. Amazing.

    • Anonymous
      September 14, 2010 at 9:42 pm

      I posted before on your other thread about ER’s. In the USA our ER’s seem to be overflowing with clients naturally wanting help. Sometimes we have to wait for 6-8 hours to be seen unless you are profusely bleeding but that doesn’t mean much now either.

      I have been to the ER and dismissed like I was a misbehaving child. I was severely ill and the ER doctor REFUSED to even examine me. He started yelling me at for no reason. My friend had to get her husband to come and have a chat with ER doc who was even rude to him” Other stuff happened I won’t go into here again that was simply a nightmare.

      My family later went wild trying to sue but got nowhere. I was told by the attorneys to start any medical lawsuit costs at least $25,000.00. I offered them it in cash if they would. Then I offered more. Since my lawsuit wouldn’t be easily won they said NO.

      If you can please SUE. Contact the hospital by registered mail and in person and the media. Make it known how you were treated and it wasn’t morally right.

      If a physician doesn’t want to be a doctor then do some other job. Being understanding–being compassionate is all part of any medical professionals job. Listen to the person talking–would you treat your own family like this??

    • Anonymous
      September 14, 2010 at 10:50 pm

      I started going numb in Sept of 2009 while pregnant and the ER docs didnt take it seriously, one tried to put me on Paxil its in my head she said. I had moved to another city 2.5 away from my family doctor. By November I could only eat puree food, could hardly talk (like the Dentist had used all the novacane in his office), could barely walk,had to look at my feet to see if they were there which was getting harder as my belly grew, not to mention the choking on my own saliva and weight loss. After many trips to the ER I drove myself, which was not easy at this point to see my family doctor of 12 yrs. He took one look and heard me talk and admited me and called a Neurologist he knew. Thank god

    • September 15, 2010 at 4:44 am

      could barely walk, a shuffle at best. Was weak all over and numb, tingling and it was spreading. ER told me after two days of tests that the spinal was negative so they didnt even bother with a nerve conduction test. Told me I needed mental help and sent me home. One doctor was afraid to touch me because she thought i had AIDS!! Treated me like I did too, asked about open sores, and had that look on her face as if she had just squished a bug or smelled something nasty. I hadn’t eaten a thing the entire time I was there and no one said a thing…I couldnt eat, digestive system was numb (I know sounds strange but that is how it felt). So I went home labeled a crazy woman, tsk tsk tsk. I didn’t bother going back even when my breathing was difficult. No one would return my calls, the original neuro would not talk to me or give me a referral to another doctor for another opinion when I was getting worse, no one would see me without a referral. So it was either back to the ER or suffer. I was so close so many times to going back in, but was scared of what would happen. Like if I forced myself to function at home everything would be okay, but if I went in it would all fall apart and I would be in a mess. 3 months later I was finally diagnosed thru my story alone and a nerve test to confirm damage. I was not crazy afterall.
      I have often wanted to write to that original doctor and tell him a thing or two. Tell him how his lack of trust in his patients gut feeling and not performing just one more test made my life a living hell. What good would it do? None. He wouldn’t care, probably wouldn’t even remember me anyhow and toss the letter out like he tossed me out.

      It is sad so many of us are sent home with the latest and greatest anti depressant or anti anxiety medication because this is all in our heads. Glad to share the loony bin with y’all. HUGS

    • Anonymous
      September 15, 2010 at 10:28 am


      From what I have read on here, it seems to be the minority that was not diagnosed immediately at the ER with GBS. It seems like a lot of people got immediate care and treatment. I fall into the minority with you. Went to the ER when I had shortness of breath, vomiting, severe nausea, shuffling around. Called the neuro beforehand and said that I was going. The ER doc did not call the neuro while I was there even though I asked the nurse if they were going to call. Treated for dehydration and with anti-nausea meds and sent home. If they had checked, they would have noticed that my reflexes were gone. Another time I went, and BP was 80/60. Treated for dehydration and sent home again. I want to note that this was not a teaching hospital, this was a suburban hospital. I feel like that makes a difference because at the teaching one, the specialists are there.

      Yes, all of this makes us angry, but suing is not the right answer, and I have a legal background. I can tell you that with medical malpractice suits, doctors are not willing to testify against other doctors, so unless you have a really good case, I wouldn’t waste your time and money on this.

    • September 15, 2010 at 11:26 am

      I was given a psychiatrists card and told I am pushing my son in sports. BTW, we didn’t really play sports other than for fun. At this time, my 9 y/o could not walk w/o assistance, dress himself, hold a cup etc.

    • September 15, 2010 at 11:18 pm

      Though I would love to slap the ER doctor silly for what happened I have no intention to sue. Any court victory would only benefit the lawyers financially, most likely being paid at the expense of an already shaky system. I’m not sure that IVIG any earlier would have helped as I seemed to be at my weakest point when in ER. I dont think that I got any worse after IVIG so whatever damage was done had already happened.

      My bigger issue was that I could have been worse. There seemed to be no policy in place when this ER was presented with GBS. That could be a problem for the next GBS patient they are presented with who could be worse off then I was.

      My biggest strain was the head-trip of learning about GBS online while thinking I was going down with it. I am humbled when I compare my case to so many others. I have lost my stomach and my guitar hands. This is irritating and losing music is only sad. I at least have in a weakened state regained many of the abilities that so many of you lost for so long. However, I thought this was an unnecessary mental strain and I was losing me marbles.

      If IVIG is proven to slow GBS damage then this hospital must not f*** up on the next poor soul who wanders in with this demon.

    • Anonymous
      September 16, 2010 at 10:18 am

      Is IVIG Proven to slow it down? I remember reading that some people on here did not get the results as others had. GBS is known to get bad and then turn around. The first time I had it, high doses of adrenal extract turned it around. I saw the results in a day or two after taking it… my blood pressure started to come down and the ascending paralysis stopped. My wholistic doctor told me he would have put me on an IV of vitamin C and adrenal extract if I had needed hospitalization. I did not get hospitalized thanks to what I was taking…but it was scary waking up each day getting worse…until I discovered High doses of Adrenal extract.

      My hypothesis is that Stress somehow is major involved. So I think we depleted our adrenal glands…and that starts the downward spiral. Perhaps some of those on IVIG, the results Might be the fact that the patient is being taken care of in the hospital and has a chance to Exhale…and let the adrenals repair. Those people back in the 1800’s with Consumption/TB..they would wake up one day and be better.What really happened was that the bacteria had “eaten” all the iron in the body and when none was left, they recovered. So there was a reason. Wonder Why GBS just turns around?? And to those still suffering, I have not figured that out yet….give me time…wink.

    • Anonymous
      September 16, 2010 at 4:52 pm

      This sounds all too familiar. I was fresh off back surgery when my symptoms hit. ER docs focused on blood clots in my legs and chased this diagnosis for a week with test after test, while my body was falling apart and aching all over. By the grace of God, a nuerologist happened to be walking by as the floor docs were talking about me, brushing off my issues as being in my head since all of their tests were negative. He requested they let him test me for GBS and I was on IVIG within a day.
      GBS seems to be the forgotten affliction among doctors. I took my experience with a grain of salt and focused on recovery, not looking back at the “whys” of slow diagnosis. But I can say this only because my recovery has been swift, being back to work (but not yet fully recovered) within 3 months of diagnosis. Hasn’t been fun but I know I am one of the lucky ones compared to most that get this.
      Bottom line is there is enough of this rare affliction that docs should be picking up the symptoms quicker.

    • Anonymous
      September 17, 2010 at 8:49 pm

      Hi all! All of us decide what to do in a medical emergency, and hopefully, with all the information necessary to make a choice that fits us and our personalities. I had a mild case and am not yet recovered. I’m angry about my disability, yet given the information I now have, I would not have made a different decision based on the downside risks of the treatments available at the time of my illness. “—- happens”. A best friend died at 25 and another at 32. Life is not fair. Yet, I still struggle to “adapt” to my new life and be a good sport during my period of adapting. I am much more fortunate than many who have struggled to recover from GBS. AND I want more. Doctors also work in a work of imperfect information and knowledge. New medical discoveries are being made every minute. If we can keep our spirits up and stay alive until cures are found, we will get back what we have lost. For some of us, time will run out before that happens. Thank all of you for being a spiritual lifeline for me while I have tested my recovery. I pray every day for those of you who are struggling with me, and for those who have struggled more than I am struggling. “—- happens”, and only some of it is fair. U R in my thoughts every day…even when I don’t “blog”.