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Judy,
I got the email you sent through the forum and replied to it, also sent an email to your home email to let you know I replied.
If you didn’t receive either and still want to hear from me, let me know and I will re-write/resend.
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Hi Linda,
I also know how to post photo’s and images/gifs and have gotten pretty good at it. Do try Norbs tutorial on how to do it and if it’s confusing, click on my name and email me, I will help.
If you can mail your original photo’s to me, I would post them for you and I would return them to you. Again, just click on my name and email me to get my address.
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If you do not mind, will you post or send me a link to the Chiari discussion group. One of the young ladies that comes to our hospital for care has just been diagnosed with this and is to have surgery in early October and she is scared and would like more info. Thanks, WithHope
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Hi everybody. Dick, congrats on the 4 year plateau, and hope you find some great pain management asap.
I should know this, I suppose, but what is the difference between demyelination and axonal damage? Neuro was never one of my areas, but I am learning! 🙁 Is axonal damage actually total nerve cell death? Is one worse to have? Does CIDP include axonal damage as well as demyelination?
I hope this isn’t considered hijacking a thread! If so, I apologize.
Mags
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If you have demylinization of the brain, how can you havec.i.d.p,not M.S.
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I was wondering about coming to the Dayton meeting even though I likely could not be a permanent member. I only live about two hours away (west on I-70 in Indiana) and I would love to meet someone else with GBS/CIDP and get/give some hugs and share some stories. What do you all think? Would that be okay to do?
WithHope for Cure of these diseases
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Question for dave-not-taz….if I may ask, on what criteria were you diagnosed of axonal gbs?
Carla
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Does foot drop and difficulty going up stairs go together???:confused:
Does foot drop and walking long distances go together??:confused:
I have great difficulty with the stairs and stepping up on sidewalks and curbs but my neuro has never said that I have foot drop.
Cathy B
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Hello,
I don’t think anyone of us will object to you printing out whatever will help you. Many times we don’t respond to posts because we can’t relate. I have CIDP, never had GBS, so many GBS questions I cannot give advice on. I cannot get SSDI, so there is no way I could tell anyone how to do this. There are alot of old posts on SSDI that you can pull up that should help. If you want to give us another try, we welcome you to stay here and keep on posting. We listen to vents and frustration too. We’ll pray for those going through bad times. But please remember that you don’t always get replies. I am one of the “oldies” on this forum, well known (I think) and I don’t always get replies.
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Jerimy, is it easy to injure joints after you start walking more? It seems like Nate does that a lot lately. First his right ankle, the one with the deformity, then his left knee, now his right knee.
All he did was stand up and pow. They swell and hurt really bad for days.
Its frustrating cause he goes to PT tomorrow and probably won’t feel like walking with it hurting.
Hopefullly it will be better by thursday when he gets his AFO fitted.
Trudy, Natesmom
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The E Does Have A Yellow Loop Around It And I’m No Dummy!!!!! JUST Challenged! All I Have To Do Is Go Online With Mozilla Firefox When I Want My Online Banking.
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I know I updated to internet explorer 7 less then a month ago and it showed that it was successful. And if I go to internet explorer site to look at “updates” it does say I already have 7, it’s just that I get that stupid warning on my online banking site that I’m not running an acceptable version. “If it ain’t broke, don’t fix it”, I have no problem accessing, so I should presume it’s their problem and they don’t know what version I run. That warning appeared before I updated.
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[SIZE=2]:confused: Hello All,
I notice that mainly everyone speaks about having hand tremors I was wondering if in anyone has experience it with your whole body? My whole body feels that way especially when I’m tired and when I’m walking in a huge crowd of people. It’s really annoying and so odd to me. The other day I went to dinner with my family and if I touched the table the whole thing would shake. Just wondering???
Thanks!!!!
[/SIZE]
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[QUOTE=montanasmum]i am so sorry to hear of your dad’s lack of progress and also the hospital care he has been receiving. I was very lucky to have excellent care during my 4 weeks in icu (all under our public health system which didnt cost us a cent i might add) Most of the nurses i had were excellent. Only a couple of hiccups – 1 nurse who was trying to take blood from my wrist (not an easy task with my veins) Luckily i woke up (bloods taken at 5am every morning) and managed to write a message to her before she butchered me unnecessarily. What did she think my central line was for? Did she think they were trying to find a vein every time they took blood, every day for 4 weeks? Another time i was being moved from my bed to the tilt table and they forgot to unhook my central line. Nearly yanked the central line straight out of my chest! Nothing too major though and like i said,majority were excellent.
As for his facial muscles, sounds like Miller Fisher. Every day my doctor would ask me to smile and frown to see if i had regained any use of my facial muscles – they were one of the last things to return. I also had a massive ulcer on my tongue – i presume from the time i was intubated as i was always pushing the tube around with my tongue. Luckily i couldnt feel it as everytime someone saw it they winced, so it must have been a ripper!
i know how hard it must be not being able to communicate. I got so frustrated – as soon as i got movement of my hands back i was writing like a madman. Before that we had a system of people asking questions and tapping my toe once or twice for yes or no.
Hang in there and keep being your dad’s advocate, you are doing a wonderful job and i am sure he appreciates it.[/QUOTE]
When you refer to Miller Fisher is this a more permanent type of GBS or is it just a different strain. We do not pay for healthcare here however the shortages are very evident especially during the holidays.
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Hello,
I developed an “over-active bladder” and just try to “rush” into the bathroom before the “gush” comes when you use a wheelchair, thumbs become “thumbs” when you hook them into your waistband trying to beat the gush.
I kept a record/diary of when the bladder problem started and how I was feeling, so I now know that my problem IS caused by STRESS STRESS STRESS, if I can bring that stress down and take a bladder medication (I take sanctura), I am close to normal.
I shopped for “undies” just in case. The nylon/satin ones look and feel and rustle like rubber pants, the cotton/polyester have a much more normal look. I had to experiment with size to find out what would fit, my regular size would not.
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I hope an administrator will respond to this request. I want to see more of our old forum back. We need the chatroom so we can help our newbies one on one. I also want to have the avatars, images/gif posting back. We need that because we deal with so much, we want to bring in fun too.
If I am able to go to the symposium in November, I will donate the bracelets I have left to GBSFI.
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[SIZE=”5″][/SIZE]
HI GLAD YOUR HEAR TO ANSWER QUESTIONS !
2 QUESTIONS
1} IS THERE GOING TO BE A CHATROOM IN HERE ON THIS SITE AND CAN I HELP IN ANY WAY?!
2}what do i have tooo to be an official laision here in my part of the country,,i have done as much as i can ,,,but never get official word!?:( :confused:
thanks scott[survivor48]