December 29, 2018 at 11:46 am
Gamagard don´t work for me, my white blood shells go down so low it is dangerous for me to get it and last time I got it it did not do anything for me, Im no on nanogam and that works for me if I get 1 liter per day and that is for 3 days evry 4 weeks.and it holds it back but I dont have not felt some big relief, pain does get little better but numbness in feet and hands are the same.
hope you don´t feel given up some days are worse then others but we have to use what we have to make our live as good as we can. One day at the time. 🙂 and smile 🙂
greetings from Iceland, HelgaMay 23, 2018 at 3:22 pm
Im have had similar exspirent, but 3 time I was dignose as a CPID for I have too much of all kind of pain fatigue and I go down more and more, after I started IVIG I have more power then I used to have after my third attack or what we would like to call it, but when it is coming near my next IVIG I can hardly move for the my pain my leggs get havy and my hands have hard time doing things. So if you start to feel similar again, go to hospital, it is better then wait.
best to you, HelgaDecember 19, 2017 at 4:21 am
Im sorry to hear that you lost friends over this. I’m 11 years old gbs surviver and for me I still get spasma and is more tierd then before gbs but that is common to most of us. This is long progress and some of us deal with it for the rest of our life. That’s fact. I say for me I’m thankful for I stand on my feet even though I have pain and numbness in theim. But be patient it could go in right way for it is only 2years since you was lay down of Gbs. Greetings from Iceland HelgaDecember 4, 2017 at 8:12 pm
well this is same here painful and it dont feel like it used to be. I have not talk about it but if some one has Iwould like to hear what they say is it nervdamage or what is the brain playing tricks on us
Greatings from Iceland HelgaAugust 23, 2017 at 11:16 am
I want to share good news I’m getting ivg next week I pray that it will help me get some help get some strength back and hope relife some of my pain. Xoxo HelgaApril 15, 2017 at 4:41 pm
Hi guy´s well I saw the nerv doc this week, and Im not getting any better since january, and the doc is talking about getting my on some meds and treat my like CIPD so now I cross my finger that it can help, I have no feelings in my front feet only in the heels, and if that goes then Im not sure I can walk anymore.
what is your opion on IVIG like they give CIPD is that working or should they try Plasma rather.
Greetings from Iceland, HelgaFebruary 27, 2017 at 1:10 pm
Hi every one, Im went to hospital in january and they could not find out why my feet was getting so weak, they nerv tested me, and as usual they cant understand why Im walking, because I have so very weak respond in nerve test and my hands are also with very low respond. But because I did not paralyzed they did not send my to rehab center, and Im struggling every day now with my feets and hands and lot of new pains. I cant get IVIG for last time I got it for 10 years ago I did not tolerate it my white bloodshell went down and I was in great danger of getting infection. But their result was after the spine tab that I had a fleur up what ever that means, I got feeling that I was not treated right because they had no idea how to deal with this and they don’t believe you can get GBS more then one time, this was my third time in 11 years. I told theim what the nerve doctor had told me about there was damage in the nerv them self not only in the mylane. They just looked at my and said that was very rare but that was the day after I told them I thought I had aman. So now Im trying to get to my doc at the hospital to get something that can help my to over come this pain and Im now numb from my toes to my hips, have hard time walking for I have little balance. so wish my luck to get some help, the system here is not for sick people you have to have strong will and be healthy to get something done in our healthcare system.
greetings from Iceland, HelgaJanuary 4, 2017 at 6:16 pm
Thank you for this I will get spinaltap tomorrow and some more test. I was talking about PE but they did not want to do that and gave my ivig instead, that was 10 years ago. I going to show them this. And thanks again:)
Xoxo from Iceland
HelgaJanuary 3, 2017 at 7:23 pm
I have been feeling more numb that used too be and weaker on feet it is getting more difficult to stand up from chers it have been turning to worsen since July I try to work and go to gym to get more strength into my muscular so times when when I’m walking I feel like I have twisted or broken my ankles and the pain is so much I could scream, this pain and all others remind my how I was feeling when I was getting Gbs. I try to stay up all day but if I don’t lay down over the day my pain get unbearable in the evening and my feet are burning, and spasms get much worse.
I don’t tell my family much how I’m doing because I don’t want theim worry about me the onset was too much for theim. But now I’m very worry about that I’m getting relaps I have this bad pain between my shoulders like I had when I was onset I have not had that pain in 10 years. Sorry I’m poring out here but I got very scare I have hard time walking on my usually speed and feel like I’m drunk I can’t walk straight. Should I talk to the docs or just wait and see if this get better?January 2, 2017 at 7:05 pm
I was not diagnosis in hospital but I had too see nervdoc few years ago and he had work at Hoskinshospital and he asked me a lot of questions and he told me I was as school examples of Amman slow progress and still have lot of all kind of nerv painJanuary 2, 2017 at 6:55 pm
It is very unlikely to get it twice but I’m one of those who had it twice my syndrome was with one year between and I was told it was not common and doctors was head spinning about itJanuary 2, 2017 at 6:48 pm
I have had difficulty in weak muscles speasaly in my feet and it have getting worse last couple weeks and muscle spasms have getting worse too the weather have been very unstable cold and raining or snowing. I’m worry beacouse I have had hard time standing up.June 28, 2016 at 12:38 pm
well I was onset 2006, never gain full power in my feet but was exercise and was getting up on my toes but, in november last then I got lot of more numbness in the feet, thought I had over worked my self but one morning I found my toes did not work, I think it was minor relapse I did not tell my family so they did not worry, it did not get worse then this but it don´t seems to come back, so I walk little different 🙂
I say if like you if I cant get up in the morning then it is something to worried about.
xoxoxoxo HelgaJune 28, 2016 at 12:29 pm
Im sorry to hear about this “faith2266” you as so many of us is on the dark site, and having CIPD must be horrible, I have enough with my GBS aftermath 🙂 and I understand your depression, but the bottom of a bottle don’t do anything for you just get you under the bottle. Stay strong and take one day at the time, 🙂
xoxoxo Helga from IcelandJune 24, 2016 at 6:16 am
Well Im in your shoes my pain is constant and increasing my feet is on flame and my hands are getting worse my doc say that i can be glad to stay on my feet. I stoped taking neorotin few years ago for it do d not go well into my head it made my drousy some day i could not drive beacouse of it. I try too exercise as much as i can and try too rest in the middle of the day. What i hate most is to sit to long with my feet down then my burning get worse. But with constant moving around it is my realese. I think it is no help in medicine with this pain the only one that has help me is sleepingpills in the evening i could not sleep for my feet was on fire after the day. Geting sleep is the best realese i have after many years of waken up every night many times.you are not alone in this and people think that it is all in our head but it is not. Xoxoxo Helga