Welcome, Brett and Tracey! I am fairly new to this forum, as well as GBS, so I don’t have years of experience and knowledge to impart. Tracey, I also deal with family and friends who say I “look back to normal” (except the abnormal gait) and have unrealistic expectations. I do my best to patiently explain that I feel different on the [U]inside[/U], no huge signs outwardly other than my waddling, spastic walk and weak arms.
Brett, congratulations on the new baby! It sounds like you have a great support system built-in with your wife and girls.
You couldn’t have found a more warm, caring and helpful bunch of folks anywhere. The “veterans” have been so patient and understanding answering my many questions since I’ve been here. So, welcome. Take care!
Welcome, Sean! I’m new here, and new to GBS with lots of questions, too. I’m starting to wonder about relapses and residuals too…what’s life going to be like now. Seems the common denominator is we experience nearly all the same symptoms, just different levels of intensity. Doctors aren’t sure about my onset since I had 1 episode of tingling and numbness and that “out of body” feeling on 12-6 (thought I might be having a stroke). It started at my feet and traveled up to my head, arms and out thru my fingers. Felt as if I was sinking down into my chair. It went away w/in seconds, the only leftover feeling was fatigue. I had a severe resp. infection at the time. Put on oral prednisone the next day, for next 4 days. Got real clumsy and tired on the 11th (chalked it up to the infection) but had the numb hands and feet and overwhelming weakness the next morning, 12-12. PCP sent me to Houston by ambulance after hearing the symptoms over the phone, neuro in H-town agreed it was GBS but can’t say if episode on the 6th was onset or if it was the 12th. BTW, has anyone had GBS following a flu shot? I had a flu shot the week of T’s-giving, got the resp. inf. 10 days later, then GBS. Any vaccinations we should avoid in future? Thanks for answering my many questions, I’ll try not to ask too many at once.
Best wishes to all and Merry Christmas!
I just posted the other day on the main forum about this topic.
I had GBS thirty years ago when I was 3. I have just recently been diagnosed with RA. I’ve realized I’m struggling with trying to differentiate and explain to my doctor the pain and mobility issues with my arthritis and the separate muscle and nerve issues I seem to be having as well that may be GBS-related. Of course, I didn’t realize that GBS has residual effects. I was never told this by my doctors growing up.
In any case, someone just posted on here that once you have an autoimmune disease, your odds of attracting other autoimmune illnesses increase. The difficulty, as I see it, and as I’ve experienced it, is the symptoms can sound like a few different illnesses (arthritis, fibromyaglia, carpal tunnel) and without having knowledgable doctors who have actually heard of GBS, the chances of misdiagnoses or worse, being summarily dismissed as a head case, are common.
In any case, I’m very curious about other cases of RA and GBS residual effects, as it seems to have really complicated my efforts to get adequate treatment. I don’t know as this helps you, specifically, but it’s a piece of this puzzle!
I luv nurses, they God’s angels. Nice to meet ya *sneeks a hug* Don’t get down. I too have CIDP. I don’t always get the boost I need from the ivig. some infusions seem to do more that others… Anywho I’m just the greeter here today. If ya got some time to kill, u can follow me and meet some folks and such. Plus games and fun……..
Welcome, I wish i could help u but i’m just the village idiot here. But ur not foolin me today. Lyme, CIDP, GBS, why thats 3 not 2. *cks his meds* Someone will be along shortly who can help prolly. Hang out, read a joke, go to the tavern, thats where all the action is.*rolls eyes* Tell us about yourself, war u b, how u b, Have a good day.
Greetings from Music City,
I’m allergic to the envioment, but not foods. I was cruising the other day in my powerchair at walmart> (Looking over my shouder for this chick that has been stalking me, her name is shannon if u see her, don’t tell her u saw me.)
here is that story, just down the page a bit if u got a min.
This kid asked me what that hankerchief was tied to the top of my flagpole. It was red, he musta thought I was ina gang. ha
I looked at him an said, “thats a snot rag boy”
so, wat u up to girl? u are a girl?