AnonymousAugust 9, 2006 at 11:44 am
I’m apologizing right off-the-bat for asking so many questons, but the board seems to be a good place to find some answers!
I haven’t read many posts from people with involvement in the face/neck. I’ve had numbness/weakness with feet/legs for years, arms/hands for months and now face/neck for weeks. IVIG had no effect of the numbness in my face or feet, but seems to have reduced numbess in my hands. Anyone else with CIDP have cranial involvement?
AnonymousAugust 9, 2006 at 12:32 pm
Yes I have got that now – didn’t take me long to get here, I’ve only had CIDP for six months or so. It’s rough sometimes but not always. It’s mostly on the right side but Monday the left side of my face went numb and paralyzed. I’ve got some of it back now but my upper lip is still numb. And the right side never improves. I was hoping IVIG would help that because it’s hard to talk and my face is shrinking on the right side – I look weird. Thank god for makeup! What are you experiencing?
AnonymousAugust 9, 2006 at 12:38 pm
Welcome to the group , I my self get facial numbness , on my lip my nose and my toungue , twice I had numbness on my one side of head , the last time was in June and my half ear was numb too. This usualy happens when I have relapse but after I have the sollumedrol the facial numbness gets better and in some parts it goes away but on my feet and hands its always there with a little improvement , I had several times double vision too .
I guess everyone responds defferent .
It is indeed a very good source for info about GBS and CIDP .
AnonymousAugust 9, 2006 at 2:20 pm
wow, I actually ran to the bathroom to see if my face looked odd after your posts, lol. Looks fine still, but it sure feels odd!! The past couple of days I’ve noticed that the numbness is feeling “deeper”, if that makes any sense. Puckering my lips, for instance, and raising my eyebrows feels weird. And one side is more pronounced than the other side.
AnonymousAugust 10, 2006 at 3:03 am
Never worry about asking too many questions here. It’s a great way of getting information, since many of us ‘oldies’ have already gone through it and are know-it-alls!:D
I’ve had numbness and tingling in my face for several years. My lower jaw is especially bad, to the point that sometimes I have trouble eating and talking–not that anyone really minds about the latter! Combine that with trouble swallowing, and I tend to drool and spit. Isn’t CIDP fun!
Best wishes in the battle,
AnonymousAugust 10, 2006 at 10:33 am
Emi’s right eye gets paralyzed so that she can’t move it to the right. It says in the middle or she can move it to the left.
She also had trouble swallowing when things were bad before she was dx’d. As far as facial numbess, I’m not really sure if she got that. I suspect that she did at the worst point. Her face just looked different then.
I was told that the last thing to “go” is the 1st thing to get fixed with CIDP because it hasn’t been as damaged. I’m not sure how accurate that is because Emi’s eye was one of the last things to “go” but it’s taken the most IVIG to repair.
Don’t worry about asking questions. That is what this board is for.
AnonymousAugust 10, 2006 at 11:08 pm
I have had CIDP since 1994. It came back like gangbusters 2 years ago. I have not had much luck with any treatment since then. I started having numbness and tingling in my face several months ago. It started in my forehead and has progressed down my face an into my neck. It seems to be the same on both sides of my face. I have also had some issues with eye focus periodically.
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