New to GBS and new to the forum
AnonymousOctober 10, 2008 at 3:41 pm
I am so happy I found this site! I have had an absolute whirlwind couple of months. I was first diagnosed on August 4th in Folsom California. I went down hard and fast. I was on ventilation in four days and stayed that way for about ten days. They tried IVIG first, but I didn’t respond to that very well for some reason. I responded immediately to the plasma pheresis, thankfully. By the end of August I was up and walking again. They finally kicked me out of the rehab hospital on the 12th of September.
I am now walking without any assistance and trying to gain back the weight I lost in muscle mass, but it is slow. Today I think most people wouldn’t know that I had to re-learn to stand and walk just a month ago! My residual problems are typical from what I’ve been reading. My right eye doesn’t blink automatically yet, nor does it close all the way without squinting. I have a little paralysis in the right side of my mouth which makes b’s and f’s a little weird. I still have the tingling, crunchy feeling in my feet, but it has receded to pretty much my toes now.
One thing I need help with. I had just had the ventilator removed and I was laying there minding my own business when, toink! A temproary crown fell out of one of my molars! It’s on the right side where I have the paralysis. So the question is, do I wait for the paralysis to go away to have the work done? I’m worried about the novacaine making the paralysis worse. Fortunately I’m not feeling any pain or anything from the tooth so I can wait if I need to. What do you all think?
All in all, I have had a comparatively easy bout with GBS if you consider 2 scary months easy, but after reading some of the stories of other survivors on this forum I feel really grateful I’m where I am at already. A little guilty even. So I will give whatever support I can where I can. I am registering my name with the neurologists in the Bay Area as a GBS volunteer coach. I had one during my downward spiral and it really helped me and my family.
So it’s really great to meet all of you and I hope to talk to you all soon!
AnonymousOctober 10, 2008 at 4:58 pm
Hi Johnny Mac! Welcome to the site and I hate to hear that you became a victom of GBS. I have the CIDP issue and not the GBS but just saw a posting in here about the teeth and GBS.
Some have had their teeth worked on with no problems but I think it was done at a later date with them. Might pay to ask your doctor about this! They might want to to wait but then again they might okay it. But being you just getting on your feet from GBS it would pay to ask that doctor first.
Would hate to tell you okay and do it and then it make you worse! But I do welcome you to the site and am glad you found us! Get well soon
AnonymousOctober 10, 2008 at 6:02 pm
[IMG]http://www.gbs-cidp.org/forums/images/editor/attach.gif[/IMG]Hi Johnny, Welcome to The Family. Here is some info for you, in regards to your question about dental work. Sounds like you are coming along well in your recovery, keep up the good work! Take care.
Since it didn’t come through on this post you can do a search. Click on members list, go to J-Jethro, click on his name, click on all posts by jethro, go to page 13, title is gbs id bravelets, bracelet info, dated 11/1/06, he typed out the information you are asking about. He also had a couple short posts on that thread about lidocaine. Sorry I just can’t type out all that he did. I hope it helps you. If you have any problems finding this article, just let me know and I’ll try to send it to you through a private message.
AnonymousOctober 10, 2008 at 11:54 pm
Thank you ladies!
I really appreciate the welcome and the information as well. I got the GBS Foundation information packet in the mail today. In it I found the list of local chapters and called the person in my area. I am really excited about giving the kind of support I got when I was heading to the bottom. This thing is bad enough. To do it alone is unthinkable…..
Hey, today I got to take out my Corvette for the first time since I got sick! Talk about fullfilling a goal. Wendy refers to her as “The other woman”, but she loves her too. Her name is Hokua. It is Hawaiian (I’m from Hawaii originally) and it has two meanings that are very apropos. The first meaning is “the color of a breaking wave” and that is obvious. The second meaning is “spiritually uplifting” and man, does she ever. In fact, everyone in our situation needs something for hokua, don’t you think? Would that be a good post or am I being dumb?
Thanks again, Johnny Mac
AnonymousOctober 12, 2008 at 7:38 am
Hey Johnny Mac,
Welcome to the forum! I had a similar problem shortly after I got out of the hospital and while my face was still paralyzed – lost a crown etc. It turned out to not be that big of a deal to fix it though he had to use those wedges to hold my mouth open since I couldn’t do it. I have had no problems with dental anesthesia since having CIDP though I know many people do have problems. No, don’t postpone it – broken teeth lead to many problems, particularly if you can’t feel parts of your mouth – and you don’t want to leave that avenue open for bacteria to invade your body. (I’m such a hypocrite!! I postponed fixing mine twice!!! Don’t do what I did!!!)
I don’t know if you have this problem but my eyes tend to get really dry because they don’t close all the way, open up at night etc. I do a double whammy on my eyes at night – first I drop in normal saline tears to moisturize, then I use Refresh Liqui-Gel, available over the counter, and that combination seems to work the best for me. I can finally make it through the night without feeling like I’ve got sandpaper stuck to my eyelids.
Good luck and keep coming back – we need more Hokua! 😀
AnonymousOctober 13, 2008 at 4:09 pm
Man, our symptoms sound so similar! They were using Lackrilube on my eyes in the hospital so we’ve been using it since I got out. I’ll have to check out yours. It felt so gross when they first started putting it in, but it’s such a rellief now at night I just go, “Ahhhhhh”. I can’t use it during the day though because of the blurring. My doctor started me on Systane for the lubrication, but it doesn’t really soothe. What do you use for the daytime?
And thanks again guys, I’ll put out a Hokua post as soon as I can!
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