AnonymousJanuary 21, 2009 at 5:13 pm
hey everyone this is my first post. i got gbs in 2006 whn i was 17…. its ben almost years now im recovering slowly.. but have got NO sensation bak yet… i dont feel hot cold sharp or dull anywhere on my body except my face… just wondering if anyone elce has experanced something like this? kinda looking for some answers…
AnonymousJanuary 21, 2009 at 9:02 pm
Hi Synthia: welcome to the forum. I can’t help you with your question, though I had no sensation in my legs or feet for months it came back gradually. I know others on the forum have stated that parts of their body had no sensations for some time, but I am sure others will have more helpful information. I wanted to welcome you to the forum. Did you have a mild or more severe type of GBS? How long were you in the hospital? Do you take neurontin or some other nerve pain medication? Do you have other residuals? You got GBS at a young age so hopefully you can look forward to many years without residuals. Jeff
AnonymousJanuary 21, 2009 at 10:11 pm
Unfortunately, I don’t have any answers to your questions as GBS can tend to affect everyone differently.
To tag on to the questions asked by Jeff, have you received physical therapy? Are you currently being treated with IVIG or did you receive plasmapheresis during the initial stage of GBS/CIDP?
AnonymousJanuary 21, 2009 at 10:31 pm
Thanks jeff and tina
Im still working on writing up my story to post it on here, i found it a lot harder then i had expected. i had a pretty bad case of GBS and because of the GBS had many other complications… I was in sick kids hospital for 4 months and then another inpatient rehab for another 4 months. I’m lucky enough not be taking for neuro pain, i was taking gabapentin for awhile but the pain is soo intermittent i can get away with taking pain killers only on bad days. unfortunately i have extreme fatigue and weakness in all 4 limbs still , like i mentioned no sensation and man issues with bowl and bladder…. i did receive physio for 4 months .. they helped me with learning to feed myself again get dressed sit up transfer from my wheelchair.. and started me up walking with a walker.. im now on my own to continue my treatment at home… i was given ivig only 4 months ago and it had no effect, they didn’t give it to me when i was first diagnosed because they had such a hard time diagnosing me… and i became very ill it was just not thought of as an option at the time… i was fairly young when i got sick but im thankful for every day.. being able t o say your a GBS SURVIVOR is an amazing accomplishment.
thanks for taking the time to write me.. this forum seems to be a very friendly place. hope all is well
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