Helga
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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 pmIm 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 amIm 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 Helga
December 4, 2017 at 8:12 pmwell 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 HelgaJanuary 4, 2017 at 6:16 pmThank 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
HelgaJune 28, 2016 at 12:38 pmwell 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 pmIm 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 amWell 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
