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Users comments and reviews on article Guillain-Barre Syndrome: Causes, Symptoms & Treatment by MariAnne
My father had this 27 yrs ago. He was first diagnosted with inner ear infection. He has not had inner ear infection since. Today he was diagnosted with inner ear infection. I guess I was just wondering if you have heard of this ever reacurring? If you could reply let me know at ****. Thank you for your time and I hope to hear from you soon.
Brent Tozer
**edited by moderator ** e-mails not allowed **
Brent Tozer
**edited by moderator ** e-mails not allowed **
| Guest wrote: |
My father had this 27 yrs ago. He was first diagnosted with inner ear infection. He has not had inner ear infection since. Today he was diagnosted with inner ear infection. I guess I was just wondering if you have heard of this ever reacurring? If you could reply let me know at ****. Thank you for your time and I hope to hear from you soon. Brent Tozer **edited by moderator ** e-mails not allowed ** |
I developed Guillain Barre about 9 years ago & was ventilator & feed tube dependent for several years. I am still paralyzed from the neck down. I also had an inner infection for the first time 17 years ago & just got one again 3 weeks ago. Recurrance is very rare but possible,
My son whom is 3 has been diagnosed with Guillian Barre Syndrome and we have now been in and out of the hospital 3 times. The IVIG given seems to where off too quick for him to recover and then it starts all over again....why is there not anymore that can be done.....this is getting old....This article is no better than others i have read...
I was diagnosed with this syndrome on my 18th Birthday 24 years ago. It began 3 weeks after I had a cold and fell down the steps at WVU my freshman year. I noticed something was wrong when my tongue went numb and I had numbness in my fingers and feet and could not raise my arm up high enought to dial the phone on the wall in my dorm. (rotary phone) I had to use a hanger to use the phone.
After completing a spinal tap they confirmed this is what I had. Within 1 day I could not walk and lost all sensation to use the bathroom. This was very upsetting for an 18 year old girl. They began plasma pherisis to exchange out all the white blood cells to try to fight whatever this was that I had. On day 3 of this they went to suction me through my nose instead of my mouth and I hyperventilated and could not breathe. The intibated me immediately. Within 2 weeks I had to get a tracheostomy and was on a ven for 32 days.
All together I was in the hospital and rehab for 3 months and was released just after Christmas.
I have had a full recovery except my left eyelid is weaker and if I am tired or smile it will sag down a little. It's not very noticable but I can tell and that eye waters every time the wind blows.
I am blessed I was so young when I got it so that I could recover rather quickly and almost at 100%. I was on the feeding tube as well, my lung colapse, I had to be on the rotobed which would rotate me from side to side so that the fluids would not build up in my lungs.
I have never gotten this again, thank goodness. I don't think it would be as easy on my now as it was then. At that time it was harder on my parents. Now that I am a parent I can't even imagine what they went through.
If anyone needs to talk or ask questions I am here to give you information as to what happened with me back in 1985.
Have a good day and I hope this may have shed some light on this disease and what can be expected.
Sincerly,
Pam
After completing a spinal tap they confirmed this is what I had. Within 1 day I could not walk and lost all sensation to use the bathroom. This was very upsetting for an 18 year old girl. They began plasma pherisis to exchange out all the white blood cells to try to fight whatever this was that I had. On day 3 of this they went to suction me through my nose instead of my mouth and I hyperventilated and could not breathe. The intibated me immediately. Within 2 weeks I had to get a tracheostomy and was on a ven for 32 days.
All together I was in the hospital and rehab for 3 months and was released just after Christmas.
I have had a full recovery except my left eyelid is weaker and if I am tired or smile it will sag down a little. It's not very noticable but I can tell and that eye waters every time the wind blows.
I am blessed I was so young when I got it so that I could recover rather quickly and almost at 100%. I was on the feeding tube as well, my lung colapse, I had to be on the rotobed which would rotate me from side to side so that the fluids would not build up in my lungs.
I have never gotten this again, thank goodness. I don't think it would be as easy on my now as it was then. At that time it was harder on my parents. Now that I am a parent I can't even imagine what they went through.
If anyone needs to talk or ask questions I am here to give you information as to what happened with me back in 1985.
Have a good day and I hope this may have shed some light on this disease and what can be expected.
Sincerly,
Pam
This is a very interesting article! I had actually never heard of this disease so it was a fascinating read. I also appreciate how everyone has posted their own experiences with the disorder to help add that human element to it. My heart goes out to you who have lived with this syndrome and I think that you're all very brave and strong, and an inspiration to the rest of us! Thank you again for posting this article. I look forward to reading more responses.
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