AnonymousMarch 13, 2007 at 9:24 pm
Hi I’m a newbie and I’m sure you guys get lots of silly questions from newbies. Here’s my story..
I was in the hospital for 4 days after vomiting non-stop and dehydration for days. I was diagnosed the day after leaving the hospital — last friday – with Campylobacter.
While at the hospital I told the nurses my legs just aren’t working right. They didn’t have an answer but released me. Yippee. So, all of the campy symtoms disappeared, but my legs got worse. Unable to move them. My feet tingle and are freezing.
I insisted my regular dr. get me in early so I went in yesterday and she was disturbed to see me in my condition – with a walker. She immediately got me in for an MRI and a Neurologist today. What another fun set of tests THAT was! EMG and all. The Neurologist thinks I may have an unusual form of GBS. So I’m scheduled for a Spinal Tap tomorrow.
I noticed just a half hour ago…I could walk! Wow!!! without assistance. My feet are still cold and tingling though. Could my “nerves” be tricking me or is this a good sign???? We think I got the Campy 18 days ago.
Is a spinal as bad as everyone makes it to be??
Thanks in advance!
AnonymousMarch 13, 2007 at 10:06 pm
I have had two spinal taps and they were both a breeze. It helps if you are relaxed about it. You’ll do great!! Hopefully that will give you some answers. I had a mild form of GBS — and my feet and lower legs were freezing (burning cold) too! I could walk — though not very well or very far for several weeks.
Best wishes for a speedy recovery…
AnonymousMarch 13, 2007 at 11:35 pm
Thank you guys so much for the speedy replies!
I realize now I probably posted in the wrong “forum” oops!
I’m just happy to have some answers and find I’m not alone with this strange syndrome.
Wish me luck tomorrow. Please keep my husband and three little girls in your thoughts/prayers if you could…they need it more than me…it’s been harder for those four!
AnonymousMarch 15, 2007 at 6:31 pm
Thanks for your thoughts/prayers.
The spinal tap went great. Having my iv’s put in when I was sick/dehydrated hurt worse! I was able to watch on the computer the procedure and saw the tubes of my fluid. very interesting.
So, my Neurologist is now treating me with IVIG everyday for 5 days. I’m given a bit of a sedative so I sleep for the 4 hours…ahhhhh 🙂
My first treatment was today. I don’t feel any different. Still unable to walk without a walker.
I can’t wait to get my independence back and drive my car (stick shift)!
AnonymousMarch 16, 2007 at 11:03 am
Give the IVIG a chance to work, usually I am tired right after an infusion and the benefits come a day or so later.Since your getting a loading dose of 5 days it may not be until all 5 days are done before you really feel a difference. Take it slow while you recover, don’t push yourself too hard. Good luck with everything and keep us posted.
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