Uppdating from Iceland

    • April 1, 2007 at 9:46 am

      Well I can now type with out much error 🙂 Im starting to stand on my feet a little bit but most of the time Im still in wheelchair. my hands are getting stronger, but still numb. I come home now each weekend and spend one night. I was glad when I could go into our Oldsmobil and could drive around and see more then the walls at the rehab center 😀 Im on Lyrica and it seems to take the edge off the pain, but somtimes I take strong painkillers so I can sleep because of the hardness of my pain. It is like I have electric in my feet and also in my hands.

      I read alot in the forums but dont comment much, but I think alot to theim that are now going through what I went through few months ago, and I want to say to theim there is no way other then up when you go to the bottom of this GBS, and live like every day is the best day of your live, that keeps me at least in sain 🙂

    • Anonymous
      April 1, 2007 at 9:53 am


      you are right. up is the way to go. never give up. never give in. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 2, 2007 at 1:16 am


      It’s so nice to hear that you are improving, hang in there and never give up.


    • Anonymous
      April 2, 2007 at 7:02 am

      Thank you for keeping us up to date. Gains are important. Typing without so many errors was an inprotant step for me. Much success in your continued progress.

    • Anonymous
      April 2, 2007 at 1:53 pm

      Hi Helga,

      So you are one of those ‘lurkers’ 😀 Keep on lurking, but we love to read posts like yours! Great to hear you are doing better.

    • Anonymous
      April 3, 2007 at 12:00 am

      It amazes that our fraternity reaches to all parts of the world. Does your colder climate influence the amount of cases of GBS? How do you think you got the bacteria? Are you still smoking?

    • Anonymous
      April 3, 2007 at 9:55 am

      Hi Helga,
      I’m glad to know you are here, and getting better. What is the incident rate of GBS per population in Iceland. It would be interesting to know if climate affects the rate.


    • April 8, 2007 at 10:32 am

      last year we got 8 GBS cases here and two of theim was cronic, so yes it is much for we are only 300.000 in popularty. but some year are none digagnosed with GBS. I got it from chicken bacteria (camfoily) i dont know how it is writen. I started to smoke again, I did not want to smoke while my hands was parilised, but when I could hold a cigarret then I started again, stupied me 🙁 . I dont think the climet here have to do with how many get this but it an´t helping with recovery. When I go out and it is cold, I get double vison and it take me few hours to get my shight right again and it makes my very tierd. so if I was in warmer climet this would not happen I dont know.

    • April 15, 2007 at 9:05 am

      with low walker, it is unbliveble much freedom, Im not alowed to walk with out some one watching over me if I would fall. Im still with drop foot on the left one. but the right one is starting to be normal.
      tell you more next week.
      every one take care, love and hugs from Iceland.

    • Anonymous
      April 15, 2007 at 11:37 am

      Helga, keep up the good work, soon you’ll be walking without supervision and you’ll be free again. take care.

    • Anonymous
      April 15, 2007 at 12:16 pm


      Congradulations on your fine progress!


    • April 29, 2007 at 9:20 pm

      Now they in the rehab center are trying too unrehab me .. I have been so long time in some hospital that Im now send out in long weekends that is Im 4 day out of the rehab at my home, and only 3 day in the rehab 🙂 well Im walking fine with the low walker but I dont get as fast as I do in the wheelchair 😀 my left foot is still droping down when I walk but I can control it little when I lay down 🙂 Im feeling happy to see that Im seeing the end of the rehab in 1 of june. But at the same time it worries me, how will I cope in the real world, I was used to do all things by my self, now I have to ask for help doing things, like taking the laudry and put it into the closet, well it is not so much for me, I hope I can do this very soon.. other wise my hubby need some happy pills to stay in sane near me:D
      best wishes to every one, love Helga

    • Anonymous
      April 29, 2007 at 9:55 pm

      Glad to hear you are doing so well!!!! I am sure your husband looks forward to the time you can be home from rehab. KEEP UP THE GOOD WORK 🙂 My husband happily did the laundry for five months after my GBS (and he did a great job!).

    • Anonymous
      April 30, 2007 at 8:14 am

      Good morning Helga
      You are doing GREAT. your healing has started and every morning when you wake up lay in bed and find what has improved over night. Gods healing is wonderful and let him do the healing. Look back at where you were and now where you are. each day is a little better. Always remember to give courage to someone else and let them know there is hope and they will improve. Please keep us updated on your progress as this is helping someone else. Have a wonderful day and my prayers are with you. Steve

    • Anonymous
      April 30, 2007 at 8:49 am

      That is Great News Helga. going home for the weekend(only 1 night) was what i worked hard to get. you are doing well, keep up the hard work. don’t worry about house chores, your husband will understand if there is something you can’t do quite yet. in time all things will come together. i tried to get away with putting the laundry basket on the handels of my walker to take it to the washer, worked well until i had to use the type of walker without wheels!!:D then i made a big mess when i tried to pick it up.:rolleyes: the point is i tried and i learned to only use wheeled walkers for that.:o the only draw back was i had to walk slower-but then again who wants to hurry to do the laundry!;)
      maybe your pt/ot will help you to start doing laundry at rehab, to show you that there are ways to do it, slowly but you might be able to do it with alittle help from your husband-what a nice together thing that makes. Don’t stress out about the future, think of it as a husband and you time, one and one, and you can educate him at the same time on what you can do and can’t do. thats a Good Thing! Take care.

    • May 5, 2007 at 4:13 pm

      [LEFT]Well this week have been fun at the rehab, they tried me with crutches, and I could do it.. I’m not good in balance, but I could do this, now I’m practice in this walking 🙂 I thank god each day for my progress, and sometimes in the morning I forget I’m still little paralyzed in my foot, at least I don’t stand up and walk away from the bed:D. I’m getting better and better in the kitchen :p So now I’m starting to get my favorite food again.. after all these month in hospital and rehab it is wonderful too have my own homemade food.

      They want me to let go of the wheelchair next week, but when I get tired I’m allow to use it. It will be strange to stop using my lovely wheelchair:D

      I think when you have GBS experience then you live change, you have not so much tolerant for negative talk, and you shut up people that want to talk like that to you, about others. I have never been much for talking about others, but I feel that now I only want the best for everybody, and I don’t like when I hear talking negative about others, it is a man in the rehab that do this and I told him to shut up this was not the way we talk here, I would never had this courage before but lot have change inside me since I got GBS.


    • Anonymous
      May 6, 2007 at 10:39 pm

      Helga, that is wonderful news!!:) Soon you’ll be running down the hallways, and then to home!:D Keep up the positive attitude!:)

    • May 13, 2007 at 7:28 am

      I come home from the rehab for good. Im always walking faster. my balance is not good yet, that bothers me alot, Im so afraid it want come.

      how long did it take for you to get the balance ok from you could start walking with help?

      But Im doing good and got little knot in my stumac for I worry going from the rehab. Im so secured there 🙂

    • Anonymous
      May 13, 2007 at 8:46 am

      Helga, it will come back slowly, just as the rest of the recovery process takes. i still lose my balance almost evertime i walk, it is getting better little by little, until i have another episode that is-then its back to square one for me. you’ll do fine at home, i’m sure your husband will be supportive of you and will understand you’re still recovering. you just have to keep that positive attitude up and live your life day to day. you’ll discover your new normal levels of energy in time and you’ll do great. to me, finding your limits was/is the hardest thing about this stuff. i still have to work REALLY HARD on following my limits, always a work in process for me.:rolleyes: Keep up the great work, Helga. you’re doing well! take care.

    • Anonymous
      May 13, 2007 at 8:54 am


      good news you are home. although each of us recovers at a different rate, you will get much better with time. if your worry continues buspar is one of the anti-anxiety meds you can take. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 13, 2007 at 10:27 am

      Great news, Helga. Keep up the good work? How’s the double vision? Are you still smoking? Quit it! Recover from GDS only to have a heart attack doesn’t sound very smart. No more preaching. Good luck.

    • May 19, 2007 at 9:30 am

      Im out of the rehab.. Im little afraid to deal with things at my home, feel so little in my soul. Im so afraid to make mistake.. Im a perfictionist so I have to make my way to understand that I cant make that demand to my self.

      Im doing okey walking few steps on my own.. everybody is afraid when I do this, but if you dont push your self nothing happen. Im getting better and better with the crutch so hopfully I will use theim more then the walker when i come home for good.

      One thing does any one feel more cold in your hand and body after having GBS, Im always cold ?? I dont understand that.

    • Anonymous
      May 19, 2007 at 9:36 am

      Congratulations on being able to go home.

      As far as being cold, Yes especially my hands and feet. But it is not all the time.

    • Anonymous
      May 19, 2007 at 6:11 pm

      Congratulations on returning home. It is definitely a scarey time in your life but it also a very rewarding time. You will soon see that it is much easier at home because you will be able to get your own routine down and figure out little ways to do things. Each day will show improvements, and regardless of how small they are just remember to celebrate each and everyone. Take care and Good luck.


    • May 27, 2007 at 9:45 am

      Well I’m going to start my last week at the rehab on Monday. I’m feeling OK, I can walk few steps on my own.. but I’m like robot when I do that. Last week my feet went nub like when I got paralyzed and I could hardly move it, I think I have overdue me walking around the store´s in Reykjavik, was walking like 2 hours constantly.. was feeling rather bad but it was so much fun going out with friends I did not want to complain to them 🙂 but I learn a lesson about sit down when your feet is killing you 🙂 it is 7 month since I was dx with GBS and it is still long road ahead to get full “recover”
      One victory .. went to shower all on my own.. stood there and wash my hair and body.. how great it was … next step is to get to my spa in the garden, what a wonder that will be 🙂
      take all care and I tell you more how it is to be home for good.

    • Anonymous
      May 27, 2007 at 9:55 am

      Helga may Gods blessing continue to be with you and healing you. You are doing so good and the excitement of doing something new is unblieveable.

    • Anonymous
      May 27, 2007 at 10:13 am

      Congratulations, Helga!!! Only one week to go before being home for good! I have LOVED reading about your progress, your feelings, and your lessons learned. I look forward to the day my almost-son-in-law can make these weekly reports of progress! Thanks for sharing your feelings about talking negative about other people – a lesson I continually need. . .even when I think I am doing well:eek: I will remember you and do better!!!:)

      Relax and enjoy your last week in rehab. And then enjoy being home!


    • June 1, 2007 at 6:39 pm

      Hi every one and yes Im home at last 7 months have past and Im still on recovery road. I took home wheelchair, walker and crutch. I hope I dont need the wheelchair much, but for long distance it can be nessesery to use it :rolleyes: My daughter and her babies are here and it is nice to have them around. It seems all so normal. exsept when I start walking and need all this space with my walker 😀 my granddaughter walks with me and say granny is walking, she realy enjoy it.
      I can take few steps on my own, it is very good feeling. Im going to keep up exercise with local therapy and also try to find a swimming pool that I can use.

      My doctor with out my asking minimezed my Lyrica meds and what a pain Im living up now, told him this morning when he was saying good bye to me that this was too low dooze of Lyrica, he was amazed but gave me prescription for 75mg of it. This doctor is the doctor at the rehab center and he have looked at me like 4 times since I came in for 5 months ago. I have no belive in him, so Im turning to my neuro doc that gave me the IVIG in the first day of my GBS.
      Sorry how it is long but Im so glad to be home again 🙂 wanted to share with you 🙂

    • Anonymous
      June 1, 2007 at 10:15 pm

      [FONT=”Comic Sans MS”][SIZE=”7″][/SIZE][/FONT]
      [SIZE=”6″][FONT=”Comic Sans MS”][COLOR=”Red”]Hooray for Helga! 🙂 ! 🙂 ! You made it home! 🙂 ! 🙂 ![/COLOR][/FONT][/SIZE]

    • Anonymous
      June 4, 2007 at 3:50 pm

      Hi, Ihad many of your symptoms and could not sleep a phic nurse recommended remeron(mirtazapine) and I started sleeping it an antidepressant and will make you eat …both of which i needed in my recovery keep your spirits up and you will get better

    • June 7, 2007 at 4:33 am

      I was trying to work at my workshop, in the morning I had went to my therapyst and down some workout exersice, then in that afternoon I went to the workshop, after few min walking around taking up things and then try to make some candle then my feet start to feel like burning and I tried to sit in few min and then start again working then the pain went worse and worse. It was almost unbearable, then my hubby came and told me to get my ass to the bed, it would come another day after this one and then I could do this candles. I know many off you have had a strange feeling in your feet and I remeber this when my GBS started that I could get very hard burning feelings but on the recovery I was so sure that would not happen not so hard pain, I have had pain that is like one or many nerves was pull too but this was diffrent. But from this all Im doing well taking more steps on my own. And insite I can almost walk between room with out any thing, I have always wall to lay to if I cant go further.

    • Anonymous
      June 7, 2007 at 9:02 am

      Helga, I’m soo Happy for You that you are Home. Please don’t push yourself too much, I don’t want you to have a relapse. Your husband is a Good Man! You better listen to him, he understands you can’t do too much yet, soon that will change-slowly, but it will come. can you make your candles while sitting in your wheelchair? Please let your dr know how much pain you are experiencing. An increase in Lyrica sounds like a good idea. Pain can get pretty intense during recovery, rest is needed also to relieve pain. Burning feet might be a sign of over doing things. The feet are the last to regenerate, they need tender loving care just as the rest of your body has gotten. My feet yell at me like that when i over do things-they are incharge! and i have learned to listen to them.:rolleyes:
      It sounds like you have a Great Support Team at Home. Stay positive and Take Care.

    • June 7, 2007 at 12:58 pm

      Thanks Cheryl for your post, yes I think I have tendersy to overdue my self. I was with my therapy and he was pushing me and he dont know me well now, he was treated me before I got GBS and he is confused how little I can do before I start to complain and he sees how trimbling I get on my feet when Im doing exercise for the feets. well enough of rambling I think Im going to lay down a little bit for I need to get out of my shoes and socks.

    • June 25, 2007 at 7:19 pm

      I thought it would be easy coming home, I almost lost my positive thoughts, it is so hard asking people to help you all the time. I try to do as much as I can but sometimes it is hard because of all the damm pain I have in my feet’s, and I get needles and pins in my arms and leg’s when I have done little bit too much, and that is very common with me I don’t know where to stop. My therapist is starting to understand that I’m not like I used to be and I’m not a stroke patient. So he is going little less on exercise and more to stop my pain with electric and he put it on my this morning and it have worked fine today. Wish I could have those thing in my home, I could use less Lyrica if I had it.
      But I’m doing OK and I’m starting to do as I said before more and more, I can walk here inside with out anything but when I go out I need the walker because of the drop foot I always put my left toe´s drop when I walk more then 5meters outside :rolleyes: I hope that will be over soon or not.. it depends of if my nerves heal right. who know not me that for sure, but my family believe I will be completely as I was before, but it seems to me few of us will be as we was, we are all little crazy people as we all got GBS and one thing I have seen all people I have talk to is one of those super people that was every where and nowhere, and had lot of smile to give, I think we will have lot of smile to give but being every where and nowhere that is a different story 🙂 well enough of this rambling here, every one take good care and lot of hugs and kisses from Iceland to you all

    • Anonymous
      June 25, 2007 at 10:36 pm

      Hello Helga you are doing great! Just keep reminding yourself not to over do it or your body will remind you quickly. I read once on the forum to let the nerves heal you need to lay down. I have done that daily and I think that was great advice, so I am passing it on to you. My first Summer home I did not go out in the yard as much. I did leave home too much but that was due to all the Doctor’s appointments and rehab. Once that schedule declined I added things that kept me moving. Quick visits to the stores and I had to remember that I could not do too many things in one day. I stretched everything over a week. Learn to listen to your body. Ease yourself into that work shop routine. I am glad you are doing so well! Take care and keep posting!

    • Anonymous
      June 26, 2007 at 8:44 am

      Helga I am so happy you are home. You are a strong humble woman and I am happy to call you my friend. I have you in my prayers and thoughts and remember ONE DAY AT A TIME and let go and let God (Steve)

    • July 7, 2007 at 7:44 am

      Well I progressing to right direction, I walk on my own here home, but my feet are like balloons, and everhting that is hard and get under my feet are like needles, I have little feelings in my toes still, but Im learning to walk and it is getting there. But my feelings in my feet have not change for around 2 months, and Im wonder if this is what Im going to have for the rest of my live, numbness and wool feeling from knees and down. I have still numbness in my fingers but what a heck that is ok.. I dont walk on theim 😀 now Im getting into my 9 month of recovery so I have been losing hope getting better 🙁 But I have set my mind to it if I dont get better then this well then I work from this point and make my live good and stop wonder if I had done this or that I would be better. 😉 Im going to try again to work at my workshop next week, I have been doing what a good housewife should do try to clean up the mess that was made while I was back in recovery, I take it slow and only do one thing at the time, but it is nice to see clean windows and things like that. And I can look at theim and say to my self [B]I DID THIS. [/B]
      Well now I have rambling enough for time being.. Hope every one has a good weekend, and rest and take care of your self … as you all know we are one speacal family 😀

    • July 25, 2007 at 8:27 pm

      I’m getting better with walking but still need to use the crotch outside. I would love to say I don’t feel any pain, but that I not so, I have still no feeling for my toes, but if I putt my foot on little stone´s it is like needle, and it hurts badly. But the good thing is I can get into shower on my own, I’m doing all the cooking here home, I wash all laundry, but I think I might be doing more then I should because I’m starting to feel my knees is sometime acting like when I was getting paralyzed and I get numb all away up to hips. But I need to push to get my home back. It is so much mess in so much places. it is normal, my hubby don’t see it with my eyes. well but I’m doing good I cant complain, I stand on my two feet and can use my hands, what more can I ask for. other residual that I still have, I want to learn to live with it and I thank each day for that I’m here and I see my kids grow. I’m now 46 years old, my mom died when she was 52 years old, So I try to love each moment that I have, it was hard lesson when she passed away.

    • July 25, 2007 at 9:05 pm

      Glad to hear that you are making progress! Don’t worry too much about cleaning the house, it will still be there tommorrow as my mother tells me! Have a nice day!

      Dawn Kevies mom 😮

    • Anonymous
      July 26, 2007 at 1:33 pm

      Helga, its great that you are able to do quite abit this early in recovery, just don’t over do, we don’t want you to have any relapses. Take the house work little by little. it doesn’t need to be all done in a short time, maybe do laundry one day along with the bathroom, then rest until the next day, do another small section like half of a bedroom along with a hallway, etc. you will be surprised at how fast you can accomplish the impossible. i’m still trying to work on my house, so i know how it can get to you when its not clean and organized like you are use to. it will get there, and you will benefit from the slow pace and rest that you need. how is your candle making coming along? if you are working and trying to do the housework, then you might want to cut the housework down into smaller parts so you can get your working in the mix also. don’t use your energy to the last drop, the longer you can go with what little energy you have the better. Keep up the walking! Take care.

    • July 29, 2007 at 4:42 am

      Im starting to be impatient I want more progress. I still have no real feelings still in my feet´s. and my knees are more and more weak, and my left foot is numb up to hips most of the time when Im walking. My hubby thinks that Im getting ahead of my self. becouse Im so eager to be indepentant and there for Im feeling all this resudant. Maby he is true and I realy hope so. But Im doing good and instead of talk much about how I feel I look forward and try to have each day as normal as I can, exsept Im still not making progress in making candles, so now Im going to do somthing else while im waiting and that is making scrappbooks for my kids and my self 🙂 I think it will be good for my hands to make somthing like that just to get some fine exercise for theim. Tons of love to you all, I do not know how I hade done with out you my internet family 🙂

    • August 10, 2007 at 1:59 pm

      Well guy´s, and girls´s Im still here trying to start my buisness, but I have been deeling with lot last few days and I feel my energy is lower and my numbness is more, I cant tell you much what is going on in my live becouse my hubby and I are under very speacial pressure from the goverment it came as much sock to me and the day I was told my legs and my hands started to get some cramps and the numbness went to the hips, I can not sleep much and my appertide is very little, that is also good, maby I loose some pounds:D. Im not loosing my humor and that keeps me up still. What could I do to relax, Im trying to use stilnoct but that only works in 4 hours and then Im awake, I dont take any nap over the day my nerves are to tight up to do that.
      hope some one can give my some addvise about this,

    • Anonymous
      August 10, 2007 at 5:50 pm

      Helga, Sorry you both are under stress. Maybe you should listen to your hubby and get more rest. It could help the nerves heal, and help with the numbness and pain. Recovery is more then just being able to move, its making sure the nerves regenerate correctly, which can take time and rest. Scrapbooking is a good idea, in short spurts, you don’t want to irritate the nerves too much. Try to take a short nap in the early afternoon, you have nothing to lose but residuals acting up.:) Take care. Hugs!

    • Anonymous
      August 11, 2007 at 8:07 am

      Helga, I have enjoyed so much reading your posts and following your recovery. I’m so sorry to hear that you are under additional stress right now. I hope things work out quickly for you. Please get the rest you need. I am 21 months out from dx and still have numb feet and pain, but it is still getting better. I think that is the good news–it is still getting better. I notice I don’t improve when I don’t rest–in fact, everything gets worse. So, please get some rest along with all your efforts to recover. I visited the airport in Reykjavik twice this summer. I’m sure I didn’t see the “real Iceland” from the airport, but what I saw coming in and taking off, was beautiful. Take care.

    • Anonymous
      August 11, 2007 at 8:37 am

      Helga, I have really enjoyed reading your posts! Keep up the good work! You are amazing! Don’t worry about the house work, it will be there tomorrow. Extra stress = extra rest. My prayers are with you as you continue your recovery!

    • August 13, 2007 at 1:13 pm

      Thank you all for nice words towards me, Im realy scear still and have nightmares about what is coming, my hubby feel so sorry putting me through this all. But I hope and pray this all goes well. I went to my therapist today and he told me he would aprove me driving. It made my heart happy to hear that. he is worried how much this stress Im dealing with takes to my approvement. He is very good to me these days no presure on exersices only light and nothing heavy.

    • August 23, 2007 at 5:09 pm

      well it is long time since I have given you any update on my recovery.
      I went to the doc that treated me at the hospital, before I went to the rehab. It was so good to see him, well he give me more months to gain more right feelings in my hands and feet, but he told me also I should be be paired that maybe it is as good as it get. He told me to practice and practice both with my hands and feet and gain more strength and I would be able to loose the crouch but maybe the burning and this strange feeling I have in my feet will be there, but I would get used to it. Yea since I got home and my improvement in the this tightens and burning and tingle in my feet did not show, I was afraid this would be result, but I’m not one year old since I was onset of GBS so I still have hope don’t I ?
      my cramping hands when I hold telephone to my ear, he thought was something I would just have to live with, it was just wrong message that my head was sending to my hands, so my shaking hands are my signature from now on:D not bad.. some hubby would say so 😀 Hope every one is doing good, and I will try to read some post over the weekend and see if I can help some one with their problem, at least give them hug.
      love you all my dear family here, I don’t know how I would have survived my GBS if it was not for you all. You gave me bravery and hope.

    • Anonymous
      August 23, 2007 at 9:27 pm


      i am 8 years post gbs this month & still improve. never give up. never give in. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 24, 2007 at 7:05 am

      Helga, Don’t give up the ship too fast Hun! Recovery can still happen, even years into it. Have faith and keep your positive attitude. Rest is your best friend, especially when you are in that much stress. Take care. Hugs!!:)

    • Anonymous
      August 24, 2007 at 10:11 am


      Nennie started posting on the forum in November last year, I cant believe it has gone by so fast. You are doing wonderfully, you have always had such a good outlook. I know with your positive attitude you will improve, as you have already gone so far already. Keep smiling!

    • August 26, 2007 at 4:11 am

      I have not stooped smiling Ali, but sometimes the feeling of not being able to do little better is driven my crazy, but that also help me keep me on the toes looking for improvements. Like some of my friends say you are a [COLOR=#8425a7][COLOR=#000000]perfectionist about me, and I think that is my main problem, I don’t like people to see me stumbling around.:D [/COLOR]

    • September 13, 2007 at 3:25 am

      yea Im going to put some update here. Went to my rehab to be check how I have been doing. And it turns out my feet are stronger YEEEE, but my hand are almost the same little better but nothing more. I have gained about 60% of what I used to have of strenght. They say practice and execise each day to use your hand and feet.
      They want me to go to swim at least 3 times a week and work out in gym 4 times. I know it sound crazy, I work at my candleworkshop at least 2 -4 hours a day, so it dont leave much time for both swiming and going to the gym and take care of the home and the family. Well I would say this was full sceadule for people that are in very good health 😀 I dont see me follow this up, either is it swim or gym not both on same day.
      I asked again what they thought about me getting more feelings in my feet. and they think it will not come much from now. They did some test with tuning fork, I did not feel much from knees and down. but I walk and I will get over this pain I have in my feet, I have got over bad pains with that just tolarete them until they get normal for me. That is how I have gone through my back pain, so this will be the same. bad in the morning and evening, but ok while Im on the move.

    • September 20, 2007 at 11:04 am

      I know.. you sure all say.. no Helga no… dont do this, well I was in this program year ago and then I got GBS and I could not use my surgery day that was 12 of dec 2006, now Im starting all over again and I hope I will be soon ready for the surgery, need to loose 14 lbs so I can stand the change going on the surgery board.

    • October 24, 2007 at 3:27 pm

      Hi every one, and yes Im alive and trying to live my normal life. How that is going is strange, Im battle with pain each day, like most of us does. Im getting my candleworshop on the feet again, and I did not know I had so much popularty or did not remember how popular my candles was. So I have of course been overduing my self and making candles all day long that should I not do for then the days after are like hell for my burning and bad pain comes both in hands and feets, But my hubby was asking if I was not tierd I answer him, I can get enough rest in the grave 😀 he did not laugh;) but I need to work to keep my sainty I was getting very bored of doing only house work and could not do theim proper becouse somthing I still cant do, but I can stand on my feet and make candles, and it takes my mind of thinking tomuch about my pain.

    • November 13, 2007 at 1:00 am

      I just wanted to say hi and let you know Im alive and still standing. I have found out that traviling long way in car is not my thing, have you found that out too? I get so tierd and have trouble sleeping after even though I want to get some rest, the pain get too much and I have to take sleeping pills to shut my mind and body down. I went with some friend to summerhouse over the weekend and well I sleept most of the time and I got tierd of all the drinking they was doing, I did not touch it, Im afraid to blend alcohole and neurotine together and then Im not so good on my feet that I need a beer to help theim geting worse:D My friends did not realise how sick I was in the real time, they thought I could do this and so did I, but I was getting worried the day before Friday that I could not make it becouse of my diarrhea but I went and they had to stop two time on 3 hours travel to get my to toilet, and this was all the weekend I did some eating and then toilet and then sleep. **** happens:p . Well this is little of me and I hope every one is doing as best they can, and keep up humor for this things we call Get better slowly. Love you all and BIG hugs from Iceland, Helga

    • January 18, 2008 at 10:17 am

      Hi every one, Im getting stronger each day after the secound attack, but Im still like I was last summer and i was hoping I would be better sooner. Im very pathient lady.. now my hubby say AHA :rolleyes: I have hard time understanding why again why me. But it is like this and I know that Im not given bigg hope of recovering for full. my feet seems to have damage more and Im still numb in my fingers and always cold… I wonder why:D [IMG]http://www.simnet.is/tofraljos/utganga.jpg[/IMG]

      This is my workshop and I hardly can walk out to it.. but I try and get my coffie there out and make some candles and then in the house again for nap.

    • Anonymous
      January 18, 2008 at 6:13 pm

      Oh Helga! I want to come visit! I live in Florida and we are still wearing shorts!! I’m glad you are home again. Just try to be patient! You can’t control what happens, but take it day by day. I should send you a beach picture to melt your snow:))

    • Anonymous
      January 18, 2008 at 6:50 pm

      Hang in there Helga…just burn a lot of candles to think about warm weather. the picture is beautiful. wouldn’t it be nice if all of us could just take turns visiting each other..that would be great.

      take care and keep your chin up.


    • January 19, 2008 at 7:03 pm

      I would love that,, love heat and sun. Im little dizzy this time and it is beouce of the sleelpingpills Im so maby Im not good in spelling or fast on the keybord.somtimes I wiss ther was some mircule that would set you free and you woul never have to take any pills and you get free to go from all of this. I dont know how I can tell you my family how despret Im to stand in this I dont want to tell when Im feeling so depressed and somthing is bother me. like to day my hands are all shaking and my head hurts, my feet are like havy meatal. This is no progress I feel going backwards when they are like this, it also efect my eye´s somtimes they dont like to watch much tv og be in the puter long time. I blame it on the nurotine. maby I should reduce the that med to see if I can work better and have more energy. What do you do to get more energy Im trying to eat healthy food cooke it my self or my daughter. but somthing is missing my energy go down and I though that when after few weeks it would go up. Im always with throughin up but never it happen. It is strange I thought when you finish your IVIG then things would start to be normal again. speacialy when you did not paralizd.

    • Anonymous
      January 19, 2008 at 9:09 pm


      My first round of IVIG was after 8 months and I was not completely paralyzed. But I only felt better for a couple of hours with the first dose. With the second dose I felt better for quite a while longer. If you had a relapse, it is going to take some time, maybe a long time to get your energy back and to start feeling better. You need to not be depressed though, and just do what you can do. And rest as much as you can…..

    • Anonymous
      March 26, 2008 at 5:18 pm

      well it have been long time since I been here, I wanted to use my username but was rejected, so I made new similar to what I had.
      It has been hard road last couple of months but Im recovering, it is mostly with my depression, it hit me hard in Feb. and I was starting to avoid any contackt with others, Im now with some shrink that seems get through my situation so I feel better and life is brighter.
      Im getting stronger but I need to nap alot and always tierd. my therapy have been ups and down, but I try to go when ever Im not tierd.
      I got off on my dieabetis meds, the doctors are going to try that in 3 months and see how my sugarlevel will be at that time.
      I went to see my nerv doc in feb. and he told me I would get use to this been like Im, Im still numb in hands and feets, with lot of pain in my feets and legs. I went also yesterday to a doc that send electric down the nervs to see how they react, and my condision is worse then it was when I was paralized one year ago, So damm it, I thought this would not happen, my relaps in the dec was not that bad.
      but Im glad to be here again, Im going to read and see if I can respond to any one.
      Love you all and thanks for being here
      Helga from Iceland

    • Anonymous
      March 26, 2008 at 5:23 pm

      Hi Helga! I missed you on here! I’m glad you are back!!!!! Gabrielle

    • Anonymous
      March 26, 2008 at 5:40 pm

      Glad to see you too Gabrielle:D

    • March 26, 2008 at 7:57 pm

      Please excuse my ignorance, but I am confused. Do the doctors suspect a different dx since your ncv/emg is worse now? Perhaps each of these episodes are infact cidp relapsing/remitting? Have you been on a regular ivig schedule before? Was the electrical test as you refer to it conducted exactly as the first with the same nerves being tested and the same docs reading the results? What is the reasoning for the continued episodes? I wish I could give you a hug to make you feel happier!

    • Anonymous
      March 26, 2008 at 8:13 pm

      Hello Helga,

      Your posting is an old one, but I would sure like to know how you are doing these days.

    • Anonymous
      March 28, 2008 at 3:48 pm

      [QUOTE=Dawn Kevies mom]Helga,
      Please excuse my ignorance, but I am confused. Do the doctors suspect a different dx since your ncv/emg is worse now? Perhaps each of these episodes are infact cidp relapsing/remitting? Have you been on a regular ivig schedule before? Was the electrical test as you refer to it conducted exactly as the first with the same nerves being tested and the same docs reading the results? What is the reasoning for the continued episodes? I wish I could give you a hug to make you feel happier!
      Hi Dawn, Im was confuesed too yes my electric test was very bad now, they just shake their heads over this, the was getting high sky with the electric in around my anckle and no respond down to my toes. They same was around the knees and just all over and both feet was alike, my left is little worse.
      I dont understand this, I dont have had IVIG regulary and the thought the last relaps just GBS and not CIDP, but I starting to think this could be CIDP becouse Im better some weeks and then I have 10 days that I hardly can do anything and my feet get weeker and my hands also and I get more numbness in my face. Like now Im on the down road, and I also get period around this weekness, but my regulari period also come, so I dont know what is happening. I think I have to relaps realy bad to they check my better out. They try to keep us out of the hospital for we are very exspensive pathient and here does the goverment put money in to the wellfare system, and every one have to take very much care of the money and people that are not that sick then they are keept out of the system.

    • Anonymous
      March 28, 2008 at 4:01 pm

      Im was starting to be have almost normal life before last christmas, then I got relaps and Im like I was in august, sept last year. It was shock to have to go into the hospital over the holidays and get my IVIG.
      My feelings in feet is like walking on balloon, my hands are numb and have very strange feeling in theim. Im trying to learn how things should feel like.
      After this relaps I got very bad depression and now I go to shrink every two weeks and that is very good for me. Lot of other stuff did pop up with this depression so Im not only dealing with my GBS in this session.
      What can say more Im on neurotin for my pain in legs and hands, I can walk outsite if Im very carefull, Im in therapy 3 times in week, and that keeps my going, but some weeks Im so tierd I cant do that, So Im very often starting again with my routin and it is somthing I dont like, I want to see result every time I go to therapy. I get very tierd traveling in cars, so I try to be as little as I can on the road.
      just aske me if there is somthing you want to know, Im not sure what I can tell you more.

    • June 10, 2008 at 4:12 am

      Im starting to feel better and my numbness in my feet is from middle of the calfs. and my hands are still numb, but I can walk, I have to think each step but Im starting to get faster and that tells my my mind and feet are starting to talk together.
      I got some stumac flue in begin of this month and dont seems to get over it, doctor´s are scear I get relaps from it. my feet have got havier but what a heck if I cant get little flu, my hubby is on his neddles and pins, very scear about me. I try to have as normal life as I can but somtimes Im so tierd that I cant work like I want to. And doing all the fine job in my candlemaking makes my nuts, my hand is so clumsy, but with practise I get there somday.
      Like we say one day at the time, it seems to me forever, I did not thought when I got GBS first time it would take such long time to get normal again, but Im still not normal and I think maby I have to stay like Im forever. But if that is the case I will learn to live with it and respect that and make life beautiful with me like I´m
      here is a link to a album about my family if you are intresting in what life is in Iceland

      Helga from Iceland

    • September 4, 2008 at 6:15 pm

      Im working my ass of like always but now my hubby tell me to stop and I put some remind in my cellophone when to eat and take pills:D
      Im learning to use my feet and hands as they are. It is balloon walk with needles and pin and somtimes very much pain in my joints. I think it might be my osteoarthritis but who cares:D pain is pain.
      I have travel alot this summer and loved it a lot, here is picture´s of my traveling this summer, here is the link [URL=”http://www.tofraljos/ferdalog/”]http://www.tofraljos/ferdalog/[/URL]
      I had great wist here in Iceland, one of our member came to Iceland and I met him and his wife, his name is John and his wife is Sandy, it was wonderful to meet theim and I did not feel so alone seeing and talking too theim both. My hubby likeded much to see theim, and we wish we could have more time with theim. This was one of best time I have had since I got onset, I wish I had meet some one while I was sick, becouse you feel so good to have some one near you that have this same thing and have done so well through the years, even though things are not like it was before onset.
      well enough of the babling, I have been reading the forums and I welcome all new members and hope they can find some help in this wonderful forums that have help me so much getting through my GBS

    • November 12, 2008 at 6:46 pm

      Well, we are living in almost closed country today, we cant get any $ or Euros in banks, and we have hard to get things from other countries becouse our Central bank is taking care of who gets to import things and who dont. It is very strange and very stressful, each day you can see it is less and less of imported goods, only food and meds are alowed in importing. I feel that the stress does not do my good so I try to stay away from news and work and work, I still have enough to make my candles and will until in begining of new year. People in the country is very mad and dont know what will happen speacaly after the British goverment put us on terrorist list. We have never used wepon here and we dont even have army, you guy´s was our army until last year. Many people here have lost their savings speacaly older people, and it hurts to see theim having nothing for the those day´s they tried to save too. my father lost lot of money, and he retierd and this was his save way to good life in the old days. one of my son in law lost his job, so it is strange´s and they have their secound baby on its way. My secound daughter is afraid they will lose their house, becouse how the loan is getting higher every day, they say to us the inflation is 20% but how everthing is going up in price I would say it was 50% I know this is maby not the right place to write this but I had to give you a glimps what life in Iceland is today.

    • Anonymous
      November 12, 2008 at 10:04 pm

      Helga I have been paying such close attention to our election and had not heard anything about Iceland’as economy. I hope things change around for you soon! Take care and keep your hope up high and your spirits up. There is things they can not take away from us! Get well and stay in touch.

    • Anonymous
      November 13, 2008 at 5:04 am

      Helga, I’ve been wondering how you are! This economy thing around the world is scary. I’m like you; not listening to the news and cutting back where I can. I can’t imagine what it would be like to try to survive with children. Just know I’m thinking about you and wish you well.

    • Anonymous
      November 13, 2008 at 9:04 am

      We have not met but I have read your past post and feel like I know you. So sorry things are rough in Iceland. Hope things get better for everyone. Please know that I am thinking of you and will be praying for you.
      Nice to meet you
      Take care

    • Anonymous
      April 1, 2012 at 10:20 am

      well Im still alive :))) I got new indentety here in this forum, not been here before 🙂 I still have not recover for good from the GBS and still resling with pain and numbness in my feet and hands, and need still having a nap over the day to make through the day. how are you guy´s? we are still closed country and have to beg if we want some cash to get to other countries or import things. Goverment are still fighting how things should be in future. But more and more people are loosing their home and geting food from the church for they have no money to support their family everthing goes into the banks to pay up loans, even though you dont own a house that the loan was to buy it for. Yea living in such small country should be easy but it aint at this time.