Everyday I wake up..
AnonymousJanuary 17, 2013 at 9:00 pm
My name is Sarah, I’m 23 years old in live in Utah. When I was about 14 years old I was diagnosed with GBS (Guillain-Barre syndrome). It had started right after Christmas I had gotten the flu, I was really sick. I remember being so achy and sore (especially my calve muscles) I could barley move for a week. I started to feel a bit better after about a week of not being able to move or eat. My legs were still sore for about 2 weeks afterwards, I didn’t think much of it at the time. Shortly after that my feet began to tingle and as time passed both my feet were almost completely numb. I didn’t tell my parents right away, I don’t know why I didn’t do this either.
One day in school, I think I was in the 8th grade, I was walking to the back of the class and out of nowhere I fell down, it was an odd feeling, like my legs just collapsed and I couldn’t feel it happen. That day I had finally told my mom, we both weren’t too concerned, but she had made a doctors appointment for 2 weeks out. During that time the numbness and tingling became worse and it was slowly moving up my legs and my fingertips. We were at the grocery store one day and I had collapsed again. This happened multiple times during my time with GBS, it was terrifying, like I had no control of my legs, and they’d just give out. I had also noticed a weird sensation in my throat, kind of like there was something my throat and it was hard to swallow. I never told my parents I didn’t want to worry them.
I finally made it to my appointment with our family doctor. I had obvious weakness all over my body, but my legs and fingers were the worst, he tested my reflexes and I had none at all, nothing would happen, that is also an odd feeling.. They took my blood and ran some other test on me to try and figure out what was going on, and they sent me home telling us they’d let us know as soon as possible.
About 2 days later they said the tests had come back normal, my blood test and all, and wanted to make a follow up appointment to run some more.
Before I made it to that appointment, I had gotten a severe migraine, I was throwing up and I was very sick. My parents in a panic called our doctor and he told them to take me to Primary Children’s Hospital in Utah. We drove up there, I was feeling completely miserable.
They got me in and did a CAT scan of my brain thinking it was some sort of tumor that was causing all of the problems, when they had found nothing, they decided to do a spinal tap. I don’t remember much of this, they had drugged me up haha.
When the test came back they had found elevated protein level in my spinal fluid, and at that point diagnosed me with GBS.
They couldn’t do much at the hospital, and they were going to send me home until I could get in with a neurologist, which was 3 months out! Why they let me go so long without any help I have no idea.
During the 3 months it got progressively worse, I couldn’t change my clothes, I could barley shower without the fear of falling, I had gotten stuck in the bathtub at one point because I was too weak to get out, I couldn’t make my bed, I couldn’t play with my friends, I couldn’t even walk up my own stairs. I had gotten very thin at this point too, I had never felt hungry, I don’t know if that is a symptom but I had lost over 20 pounds. I was always afraid to ask for help from my family, so I became very secluded.
When we decided to get a wheelchair for me is when my parents realized I was in need of help than, not 3 months out! They called the doctor and told him how bad it had gotten, they finally got me into an appointment sooner with the neurologist.
They were in complete shock when I came in on a wheelchair.. why they were so surprised beats me. They pretty much let me get this bad without giving me the help I should have had before it had gotten to this point!
They did an Electromyography on my muscles and almost all were not responding. My F waves and H-reflexes were prolonged and some were completely absent.
They sent me to get an IVIG in the hospital were I stayed for about 2 days, they sent me home once again.
A couple of weeks after that I was starting to do better, I could actually get up on my own and was getting my strength back, after months of this I could finally almost walk again. I was lucky to have almost made a full recovery, though I still get symptoms of GBS and some of the problems I had never went away, with my hands, and my legs, which will always be damaged.
Why they had decided to wait so long to treat me, I will never know, but it never had to get this bad, and they let it, in a way I feel betrayed by the doctors that treated me.
Every time I get the flu or any sort of weakness or muscle aches I have a huge fear that it will happen again. It impacted me life so much, and I’m sure everyone who has ever had to go through it, or never recovered the way they should will always have to deal with the impact of GBS.
Some days are still hard, even 9 years after the face, I get tired easy, I still get weakness, and I get tingling as well.
But everyday is a new day, and everyday I wake up being able to stand, run, write, and even shower on my own is a triumph and I’m proud to say I survived GBS! =]
January 17, 2013 at 10:12 pm
You are very fortunate, because it could have been much worse. GBS is considered a medical emergency, and those afflicted with it must be closely monitored for signs of breathing impairment until they are well into the recovery phase. From 1990 to 1993 three medical books were published on the subject of GBS. I can understand that your primary care physician would have been unfamiliar with GBS, but he knew it was neurolgic by the absence of reflexes. The hospital, certainly, should have understood the seriousness of the disorder and should have had a neurologist on call for emergencies. I think, though, that it was due to ignorance, not betrayal. Insurance may have been a factor as well, unfortunately.
Cases like yours are the reason for the existence of GBS-CIDP Foundation International, which strives to increase awareness of these disorders so that they will be treated appropriately when they occur. Thank you for sharing your experience.
AnonymousJanuary 21, 2013 at 2:39 pm
interesting that you keep mentioning a sore throat. I was having radition for breast lumpectomy..and had symptoms of a bad sore throat for days..they were doing radition close to my throat due to lymp nodes in armpit area…anyway 15 days into radition I got weakness in thighs. and within days was in hospital and diagnosed with GBS…1 yr. later after lots of ivigs still have tingling, numbness and pain in hands, feet. and legs….just wish drs. knew more about this disease…we all have so many questions..and no where to go except here..thanks for telling your stories.
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