How quickly were you treated?
AnonymousMay 28, 2006 at 10:59 pm
I was admitted to the hospital five days after my first symptom started. The first couple of days, after I already had numbness in my hands, feet, had a brutal headache, and couldn’t move my eyes without severe pain and also had trouble walking. I thought the neuro was quite slow to work out a diagnosis and treatment. The ER did a CAT scan on my brain and an MRI on my brain as well as taking some blood. I was admitted on Monday then the testing slowed down to one test a day. Tuesday I had an MRI on my neck. By this time, I couldn’t stand unattended, and lost small muscle skills and had trouble swallowing. Wednesday, they did a spinal tap, by that time, I was numb in my trunk and face. Thursday, the results came back showing elevated protien. To my unknowing, the neuro still had my diagnosis on my chart as “headache” so the nursing staff thought I was a hypochondriac and ignored most of my requests for help such as water, pain meds as soon as I was able not in their own good time within an hour of asking, and a soft diet as I couldn’t swallow too easily. But I digress, Thursday, the neuro didn’t do anything and now I needed my husband to drag me to the toilet and became incontinent since I was numb in my trunk. On Friday, my 5th day in the hospital, the neuro brought in another neuro for his opinion. The other neuro took one look at me and said that I needed to be placed immediately in IC as he said that I was a day away from needing a ventiliator since I lost muscle control in my neck. That was 10:00AM. They didn’t move me until 10:00PM and started treatment at 11:00PM. I had deteriorated so much that the 5-day IVIG had to be administered in two nights. During the first coulpe of hours, I woke up with a sharp stabbing pain in my chest. They x-rayed for a blood clot and a few days later did an MRI on my legs and also did a CAT on my lungs. No clots showed up, but I still have awful chest pains. I followed up with a cardiologist, who said my heart was fine, and my current neuro has blown it off saying that the chest pain isn’t his problem and I should ask my GP.
I feel that if the hospital neuro started tests earlier and treatment faster than five days after being admitted, I might not have had such severe damage that no one can tell what the recovery will be. How quickly was everyone else treated after they got diagnosed?
AnonymousMay 28, 2006 at 11:05 pm
They really did wait a long time before taking action. I was still in the ER and the Neuro on call started me on IVIG on the hunch that I had GBS/CIDP. So I was started on it within 6 hours or so of getting to the ER. I am very thankful that he made that decision, I am sure it helped me in my eventual recovery.
AnonymousMay 28, 2006 at 11:21 pm
Good to hear from you again. The more people I talk to that were treated very quickly makes me think that my doctor was negligent, but then it’s my word against his and there’s no way to detect how much more damage was caused as he was treating my case like a strategic chess game waiting for the disease to make its next move. The sad part is the very first night he said that his thought was it was Miller Fisher – a variant of GBS and treated the same way with IVIG. Since I was getting worse by the hour, there was no sign of me recovering on my own.
AnonymousMay 29, 2006 at 1:51 am
I was diagnosed within 3 hours, but for some reason they decided to observe me for the next few days. I’m convinced that they panicked by my coughing on liquid tylenol and ventilating me. I finally received plasmapheresis once I was weaned off the vent, approximately 8 days after diagnosis. By that time I was completely paralyzed.
AnonymousMay 29, 2006 at 9:55 am
I was feeling weak and weird a couple of days before one day, as I was getting out of bed to go to the toilet, I suddenly fell cause of my legs inability to carry me. I was taken by an ambulance to the hospital and once there a doctor started examining me. As my speech was blurry and my body was paralyzed (not completely) the doctor was convinced I had taken some drugs during the weekend (this was monday). He was goin on and on with these questions about drugs…maybe somebody slipped something into my drink etc. I can understand it to a certain degree since I explained to him that I had smoked marijuana and had some beers, but I felt very uncomfortable with him seeming to not believe what I told him as I was laying there paralyzed.
I actually dont remember much after this, but I have been told that I was sent to different units of the hospital taking different tests. 2 days later they were sure of my diagnose as they needed to put me on a ventilator in the ICU. After this they started treatment very quickly, I was treated with plasmaphoresis (bad spelling?) 4 times in one week and I’m sure that they started this treatment quick help lead to my quick recovery.
It was very frustrating that they couldnt find out what was wrong with me right away, but I can understand that its difficult for the doctors as well recognizing a rare disease like this. In my case they even explained to me later that they were still not completely sure what had happened cause I had some values that were not consistent with GBS. Anyways…my story got a happy ending so I’m not complaining 🙂
AnonymousMay 29, 2006 at 9:58 am
My first symptom was on a Thursday night. I didn’t recognise it as anything wrong until the next morning when the numbness was worse. I went to my doctors office that Friday. They took xrays of my lower back and sent me back to work. The next day was worse. Went to the ER. Told me it was something neurological but didn’t want to call in a neuro at that time and sent me home. The next day, Sunday, I couldn’t stand unaided. Went back to the ER, they called the neuro, waited for him for hours and he spent 5 minutes with me and diagnosed GBS. Between first symptom and admittance to hospital was 3 days. I believe they started IVIG that night. Between admittance to hospital and respirator was about 36 hours.
AnonymousMay 29, 2006 at 7:21 pm
get this..i get sick on 12/31..not officially diagnosed (other than those who said i was merely depressed and need psychiatric help!) until memorial day weekend….this was 8 years ago, but apparently the memory is fresh…ha! yes, i laid for 5 months basically paralyzed for many of those w/ no one having a clue what could possibly be wrong w/ me???????????????? calgon!!!!!!
AnonymousMay 29, 2006 at 7:39 pm
Frank was diagnosed within 3 1/2 weeks and that was because he didn’t get bad until Christmas week of 2000. He was diagnosed on Jan1, 2001 3 1/2 weeks after taking that miserable flu vaccine.
He had been stumbling and falling for 2 weeks and had a Neuro appointment for Jan 8th, but wound up in the hospital on New Years Day , the Neuro that came in was heaven sent, he knew right away what was going on. Did the spinal tap and Frank’s proteins in the spinal fluid were in the 400 + range. They also did a CT scan to rule out any other illness like a stroke or MS.
Those 3 weeks were enough to give him severe axonal damage. They started IVIG that night. He never recovered enough to return to work or do much of anything else for 2 years. I did everything for him, bathing,dressing, putting on his shoes, cut his food up into small pieces because he used to choke on his food. You name it I did it for him for way over a year until he could do things for himself. He used to get so excited when he could finally put on his socks or tie his shoes. But even after 6 years he still had a lot of problems and couldn’t use his hands properly. I had to watch him like a hawk when he was using a knife, he used to cut deep into his fingers and never feel it.
AnonymousMay 29, 2006 at 10:27 pm
hi guys..i had a slow downhill progression that took approximately two months, by then my lungs started to shut down and i was admitted to icu..i assume they started ivig immediately after that but i’m not sure. i know they diagnosed me after i had been at the er for about 12 hours. however, i had already been seen by a neuro two days before and he suspected gbs but he didn’t treat me for it. not sure why that is:confused:
Brandy, it is so great that you continue to be part of our family. how i remember the first time i put my own socks on..what a celebration, or even putting on my own deodorant. our family and friends are a great support group for us and i appreciate everything they did for me and still do but there is no better feeling than doing it for yourself. but brandy we will never forget frank, he was a trooper to all of us.
take care guys
AnonymousMay 30, 2006 at 1:20 am
I had symtoms for a week before I was admitted to a hospital. I went from a normal 29 yr old to unable to walk in a week. Within that time frame I was sent home 2 times from my primary doctor and 2 times from the ER. It was actually a friend of mine who called me on my way to my doctor for the 3rd time that actually did research on my symtoms and told me to ask my doctor about GBS. I did and was admitted to the hospital that day. I still wonder had it not been for my friend how long it would have taken before they would have figured it out. But I don’t worry about it too much and just Thank God for my friend. 🙂
AnonymousMay 30, 2006 at 2:05 am
It took about 3 weeks for me to be diagnosed. I wasn’t taken as seriously until my right eye stopped tracking then the doctor new something was very wrong. I lived 100kms from where I was finally diagnosed. I live in a country town and the doctor that saw me had never had a patient with GBS before. I understand that this would have been hard for him.
AnonymousMay 30, 2006 at 8:24 am
Hi Laura, i have been paralyzed 4 times since aug 05. i have seen sooooo many drs and have had sooooo many tests done i have lost count, and i still have no “for sure” dx. i wasn’t treated in aug, was treated as if i were a psych case and was doing this to myself. was treated with ivig in oct, had a bad reaction to it. wasn’t treated in dec-same dr that i saw in aug. wasn’t treated in may, well told i needed psycho pain management therapy, pain is under controll with neurontin, same psych dr who told me it was all in my mind the first time also saw me the last time. i still have a dx of “generalized weakness”. at the moment i still have no feeling of hot/cold, numbness/tingling in extremeties, pain is still controlled with neurontin, edema is being treated with lasix, asthma and hypothyroid are under good control as well, still have to do timed voids as i have no feeling in my trunk, still use a cane for short distances and a wheelchair for long, balance is always a new experience, everytime i get up or move its like being on a ride at an amusement park, and my heels hurt constantly. thank goodness i was approved for disability 2 weeks ago, now maybe i can start to pay on some of my drs bills, for the dx of….who knows! i have even gone to the cleveland clinic for a second opinion—-no help from there either-just more tests that were already performed. someday maybe my neuro will put a name to all this madness—still crossing my fingers. take care! stay positive!!!!:)
AnonymousMay 30, 2006 at 7:05 pm
My first episode with GBS
I got sick on the 17th of november my gp treated me for flu and when I saw him on the 22nd he sent me to University of wisconsin after 5 1/2 weeks they were convinced I had had gbs and was starting to recuperate.
(total parlysis and on a iron lung for 3 days. that was in 1965 2 years later the docs felt I had rercoverd 100%
I started falling down for no reason in the spring of 2004 and finally went to doctor in october. I told him i felt my GBS was recurring he looked at me as if I was a card or two short of a full deck. finally in march of 2005 i was sent to a neurologist who Dx’ed CIDP in may of 2005
although plasmapheresis, IVIG, and steroids all help the symptoms and stopp the progression momentarily none reverse it or put it into remission . Could the length of time for Dx be the reason it won’t go away??
GOOD LUCK-GOOD HEALTH
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