I’m new here!!!
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December 3, 2007 at 3:47 pm
hey everyone, I’m new to this. My name is Jenny, I’m 22 and from Dublin, Ireland. I was diagnosed with GBS in February 2006. I’m about 90% recovered now but still have problems with chronic fatigue and hypersensitivity. It’s been an absolute nightmare of a journey but I just thought I’d join this so I can help people out and answer any questions that anyone might have 🙂
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December 3, 2007 at 4:17 pm
Welcome Jenny! How long were you in the hospital and were you treated with IVIG or PP/PE? Did you receive any kind of rehab? Did they do any treatments toward your hypersensitivity? The chronic fatigue is very common and one of the things that most of the older members here still have to deal with. You mentioned that it was an “absolute nightmare of a journey”? Were you on life support or misdiagnosed? Did you see a Neurologist that was familar with GBS before? Do they have an idea what caused your GBS? I am glad you are hear to help others. We also dedicated alot of our time helping the caregivers too. Without any of these people we would not be able to educate anyone that has to go thru this. You have come a very long way in a very short time and still have a long journey ahead of you like most of us do. I am glad you have found us. Many more will be around to post also. It will be interesting to find out what they do in other countries. Very helpful to know we are not alone!
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December 3, 2007 at 4:35 pm
wow, thats a lot of questions!!! wellmy gbs was caused by a chest infection. it came on over the space of a week starting with numbness in the feet and fingers and it gradually spread and i got weaker and weaker until i woke up one day and couldnt move! i had been to g.p doctors but they miss diagnosed me and didnt know what was wrong. i went to casualty then and saw a neurologist. she diagnosed me in 5 minutes. she did a lumbar puncture. i was in that hospital for 6 weeks, i had nerve conduction tests, m.r.i scans xrays, they monitored my breathing and did other tests. i also had dificulties with the lumbar puncture and had to have an operation to fix that. i was treated with immunoglobulin, 3 bottle a day for 10 days by drip. i have no veins left in my arms left cos of that! i also had light physio there everyday. i was walking with a frame after 2weeks. i went home then for 3 weeks and then went to a rehab hospital for 5 months for intensive physio. I was on a lot of painkillers for the nerve pain and hypersensitivity. i weened myself off all that about 10 months ago though. im still sensitive but its bearable. it took about 6 months for me to get the feeling back in my legs and it took nearly a year to get my balance back. i still cant run either.
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December 3, 2007 at 7:16 pm
Jenny, it’s very nice to meet you. Welcome to our family. Hope to get to know you better.
Jerimy
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December 3, 2007 at 7:35 pm
thanks Jerimy! nice to meet you too.
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December 3, 2007 at 11:06 pm
Jenny I am sorry for all the questions. It is nice to meet someone else with GBS. You know what each other has been thru and what they have gone thru. Even when each of our cases are very different we share alot in common too! You have come a long way. Keep up the good work! Again sorry for all the questions. You will be a great asset to this forum. We find many medical teams have problems with dx it seems yours come up pretty quickly with a plan of attack and got you thru this fairly well.
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December 4, 2007 at 7:33 am
i think you just need to learn be patient and stick with it and keep fighting. 🙂 its ok, ask me as much as you want! i dont mind!
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December 4, 2007 at 8:39 am
Hi Jenny, Welcome to The Family! It sounds like you have weathered the storm, and have come out the otherside in pretty good shape. Keep up the positive attitude, and don’t forget to get enough rest. Take Care!:)
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December 4, 2007 at 8:48 am
Jenny WELCOME.
I got GBS a yr ago (NOV) from a flu shot. Mine was mild as it only got to my feet and knees. I still have numbness in my right foot. You will meet some really careing loveing people here. We as you. give back as much as we can to help and guide others. You are so right think postive and one word I do not like or use is LUCK. nothing with GBS is luck it is a blessing. and with faith we will be ok. may Gods blessings be with you and have a HAPPY MERRY CHRISTMAS (Steve) -
December 4, 2007 at 11:47 am
it took a very long time to look at things positive;y. i used to look a back at what happened and cry and feel so angry about what happened. i have had counselling and stuff though and i see it all in a new light. when i look back now i smile and give myself a pat on the back!!
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December 4, 2007 at 11:50 am
[QUOTE=mochacat]Jenny WELCOME.
I got GBS a yr ago (NOV) from a flu shot. Mine was mild as it only got to my feet and knees. I still have numbness in my right foot. You will meet some really careing loveing people here. We as you. give back as much as we can to help and guide others. You are so right think postive and one word I do not like or use is LUCK. nothing with GBS is luck it is a blessing. and with faith we will be ok. may Gods blessings be with you and have a HAPPY MERRY CHRISTMAS (Steve)[/QUOTE]thanks Steve, Merry Christmas to you too! i have heard of flu injections causing gbs before but i have never met anyone that it happened too. I already have met some lovely people on here, I should of joined a long time ago!!
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December 4, 2007 at 4:16 pm
Hey Jenny…Positivity is the ultimate life-cure, isn’t it.. two years from onset, and back to work 34 hours a week…I still don’t have fine motor skills in either hand, and I’m walking with AFO’s (still have the dreaded foot drop!). No Big Deal!! I’m alive, and so fortunate to be here…Good for you Jenny. Are you going to make it to Chicago in November 08?
Peace, Dave
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December 4, 2007 at 4:24 pm
[QUOTE=dave-not-taz]Hey Jenny…Positivity is the ultimate life-cure, isn’t it.. two years from onset, and back to work 34 hours a week…I still don’t have fine motor skills in either hand, and I’m walking with AFO’s (still have the dreaded foot drop!). No Big Deal!! I’m alive, and so fortunate to be here…Good for you Jenny. Are you going to make it to Chicago in November 08?
Peace, Dave[/QUOTE]
well done on your progress, im still only working 15 hours a week but its quite physical work so im doing ok! i had AFO’s too! I forgot about them til you just mentioned it there! what’s in chicago in november 2008??
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December 6, 2007 at 5:44 pm
The GBS World Symposium…smack dab inth e middle of winter!!! Should be tons of fun and informative!!!!
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December 6, 2007 at 6:01 pm
[QUOTE=dave-not-taz]The GBS World Symposium…smack dab inth e middle of winter!!! Should be tons of fun and informative!!!![/QUOTE]
ive never heard of that!! tell me more!!!!:)
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December 17, 2007 at 1:57 pm
The website should have information on the next World Symposium. It occurs every two years (in 2007 it was in Phoenix, Arizona). Many Doctors and other GBS experts are on hand to lead seminars on different topics. I believe there were about 200 GBS patients there!! It was great…all the support was wonderful!!
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December 31, 2007 at 12:19 pm
Welcome Jenny, I cant run either.. it is a same but life is a ***** and we live it 😀 But it is special experiment to have this symptoms and it is always surprising how our mind and body respond with it. But with fight and being optimistic we can overcome so much. Hope you have great new years evening. and Happy new year !!
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I’m new here
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July 7, 2006 at 8:39 am
Hi, I’m new here, and I’m so glad to have found some people that have been through what I have! I got GBS March 1, 2005. It was a Monday morning and I got up early to go to the bathroom and my legs didn’t feel “right” and i remember even thinking “I wonder if I’ve had a little stroke?” but I went back to bed and when I got up a couple of hours later, I told my husband, “Something is wrong with my legs.” They felt rubbery and weak, and as the day progressed they got worse. By Tuesday morning, I couldn’t use my legs at all and we went to the doctor. By Tuesday afternoon, I was losing the use of my arms and the doctor put me in the hospital in our little town. By Tuesday night I had lost all use of my arms, hands, and legs. My doctor is young and had just taken over the practice from my old, experienced doctor, and the new young doctor didn’t have a clue what was wrong with me. They called a hospital in Nashville to see if they had a bed available, and when he talked to a neurologist there, he said “Without seeing her, and without doing any tests, I’m going to say that she has Guillain-Barre Syndrome” and none of us had ever heard of it. So I was transported by ambulance to Nashville, where I had a spinal tap and was diagnosed with GBS and started treatment (bags of immuno-globulin for 5 nights) immediately. I was so blessed to be diagnosed and treated early, and mine never progressed beyond the paralysis of my arms, legs, and hands, which was bad enough! I was so out of it with morphine, that I didn’t have sense enough to be scared, but my children and husband and brother were!! I was put on every prayer list for miles around and all my friends from other states were notified and started praying, and I firmly believe that’s what helped my fast recovery. I was in the hospital for 19 days, and had 3 weeks of PT after I got home. I’m almost back to “normal” except for being so tired all the time and no energy. Question—is this normal? None of the doctors at the huge hospital in Nashville said “Call me if you need anything”, and my doctor here in our little town isn’t very knowledgeable about GBS, although he has studied and read up on it since my case. The soles of my feet feel like they are on fire and I have to wear my socks inside out because if I wear the rough side in, it feels like I’m walking on gravel. I have shooting pains in my toes. The skin on the soles of my feet complete peeled off the week after I got home from the hospital. So aside from the tiredness and the lingering feet problems, I’m doing well. My husband and I are Red Cross volunteers and I want to get to the place where I can go to out of state disasters again, but unless I get more strength and energy than I have now, I won’t be able to. Thanks for letting me share, it’s good to talk to people who have “been there”. God bless you all.
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July 7, 2006 at 8:58 am
Welcome to our “family” and thanks for sharing your story 🙂 As you continue to read and research the posts, you will find that continuing fatigue is the most common thread. Every thing which you describe has been experienced by many others, hence I guess you could say it’s “normal” 😮 Others will be along to share more. Gene is our “resident expert” on how to care for yourself when tired! Please, don’t hesitate to ask questions.
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July 7, 2006 at 8:59 am
Hiyas,
Welcome. I know where woodbury is. Been there many times, but not in a few years. Still just one redlight? Hang in there, keep in touch. Enjoy the good weather the next few days. -
July 7, 2006 at 9:37 am
Welcome Piano Woman, glad you found us.
Jerimy
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July 7, 2006 at 9:47 am
Dear Piano Woman, Welcome!
My dad was diagnosed in June 2006 so we’re newbies too. He, too, has skin peeling off, but it’s on his fingers.
Again, Welcome!
trevawoman
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July 7, 2006 at 12:52 pm
[B]Welcome![/B]
[COLOR=”Red”]Hi PianoWoman!
We all do know what you are going though. Hang in there!
I was just in your state in May. I had a wonderful time. We still talk about being there. I remember seeing a restaurant (not in business any more) called
“Uncle Buck’s Chicken, Fish , and Such”. We still are laughing! Trying to figure out what the Sam Hill is “Such?”:DOh well, glad that you are here!
QueenDuchess
aka
Jennifer[/COLOR] -
July 7, 2006 at 1:13 pm
Welcome Pianowoman,
Just as Judy Z said, fatigue is unfortunately so common amongst us. Fatigue was my number one residual from GBS 20 years ago, but never to the point of being debilitating, until the last 2 years or so. I have some days where I feel ok, and as a result try and change the world – well, not quite – but try and do tons around the house, then unfortunately its payback time a day or two later. You have to listen to your body, its so hard to do, and so very frustrating, but, thats the way it is with GBS/CIDP. Glad you found us!:)
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July 7, 2006 at 1:24 pm
[QUOTE=QueenDuchess][B]Welcome![/B]
[COLOR=”Red”]Hi PianoWoman!
We still are laughing! Trying to figure out [B]what [/B]the Sam Hill is [B]”Such[/B]?”:DJennifer[/COLOR][/QUOTE]
humm, city slicker.
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July 7, 2006 at 2:02 pm
[COLOR=”Blue”][/COLOR] I know how you feel, I have dealt with the lack of energy for over 17 years now and it seems as I get older the quicker I get worn out from doing the simplist things. I never had peeling that I can remember and truth be told when I was diagnosed with GBS 17 years ago the Neuro docs had a field day with me because they had not had such a bad case of GBS before. I think they put me in a medical journal not sure was so long ago. I have flare ups to the point where I just can’t get much done because everything in my body is weak. It is something that unfortunetly will never go away. But we keep going and never stopping.
Andy
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July 7, 2006 at 2:58 pm
Thank you so much, everyone, for sharing with me and welcoming me to the “club”. I was hoping someone would tell me that this fatigue would suddenly and miraculously be all gone in a certain number of months, but it’s not so, is it? I dread to think that this will go on for months and years, but if it does, I’ll deal with it. I don’t have much choice, do I? Thanks again for the encouragement and the nice messages. PW
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July 7, 2006 at 4:16 pm
I am glad that you came to our board. For me my case got caught early and I am thankful. I had skin come off on my hands and couldn’t really figure it out. I get the fatigue and pain. I currently am taking Topamax as I found that neurontin did not help with the nerve pain. Every one is different and so to that everyone has different experiences. Hope that you feel at home here and that you can find some hope here.
Sonja
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July 7, 2006 at 4:38 pm
Greetings PianoWoman,
Ditto on what everyone else said. I’m almost 10 years post and deal with fatigue every day. It is just a new way of life, period. I try to look at it like I’m slowing down to smell the roses. You’ll find many of us are on different meds. I just started taking a new one called Cymbalta which helps me mentally and with the neuropathy.
Let this forum be your second family. We understand and you can come here and let it all out on really bad days. Together we get through life a little more enjoyable 🙂 Welcome to the neighborhood!
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July 7, 2006 at 6:13 pm
Pianowoman, welcome to the family. i hope you can get back to your red cross work soon. but right now you are the one who needs the help, take naps when your body feels tired, rest is important. keep a positive attitude, it does wonders! take care.:)
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July 7, 2006 at 10:16 pm
Hi PianoWoman,
I enjoyed reading your post. My fiance got GBS a month before you and is still becoming fatigued easily too. I’m from Smyrna and had a flat tire in Woodbury once, but I live in Chicago now. My cousin lived in Woodbury for several years though.
Good seeing you, in a matter of speaking!
Shannon
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