axonal type of GBS female age 39
AnonymousJuly 27, 2006 at 1:19 pm
hi please i am writing on behalf of my sister as she can’t write herself, she wants to know if others like her have had a severe form of GBS axonal type. she got gbs in april 5th 2006 ie four months ago, she has not been under ventilator thank god, she got her plasma IV in due time. five days then three other days, she was completetly unable to move, but now she can move some of her fingers she can sit as she couldn’t before, today she could even take a cup in her hands,
anyone willing to chat
AnonymousJuly 27, 2006 at 2:41 pm
I didn’t have axonal GBS, I am a CIDP’er but I wanted to welcome both you and your sister to the forums. There are other axonal GBS’ers here who will respond. Your sister is in my prayers, tell her I am praying for her and that GBS stands for Getting Better Slowly. Glad you found us, ask lots of questions if you need to.
AnonymousJuly 27, 2006 at 6:30 pm
Hello, I was diagnosed with GBS on May 15, 2005. It turned out to be the axonal version. I am now 14 1/2 months past that date. I went down fast and hard. From perfectly fine to on a respirator in 5 days. I spent 2 1/2 months in the hospital. I was able to walk out. I still have nerve damage to my feet and toes, but I am living my life. It is hard sometimes with the fatigue, but I try to rest when I need to.
AnonymousJuly 28, 2006 at 10:47 am
Here is my experience with the AMAN version of GBS for what it is worth. My type was descending type so arms paralyzed at first then legs.Not on vent. Could walk a little in six months, could brush teeth and comb hair in 10 months, could drive in 14 months. Recovered 85% (but my age was 70). Did spend a lot of time exercising. Water exercises very beneficial in early stages of recovery.
AnonymousJuly 28, 2006 at 11:32 am
For a doctor to banter around the words ‘axonal damage’, is another safe play on their part. Every single case of GBS has, to different degrees, axonal damage. Look at every statement made by people who claim to be 100% after recovery. “I’ve recovered 100%, except for a little numbness and……” The point here is, to not take the word axonal as a fearful word, or a word that has any bearing on your phisical outcome. It’s way too early in her recovery to be discouraged about axonal damage, or even talk about it from the docs. She’s recovering well, and it will continue, and that’s all that matters. Take the word axonal, and put it away in a drawer. Means nothing at this point.
Steve, mine started in my hands and ascendened from there, but I could say my arms, if not aware, was where it started, which is textbook sympton of GBS. Starting points are hands or feet, and both ascend, or it can seem at the time, that it’s in both.
AnonymousJuly 28, 2006 at 2:34 pm
It’s importent for me, that everyone understand ‘axonal damage’ to it’s fullest. Yes, it means it will probably take longer in effected areas, to recover from. All that says is, you now have a general time frame to set and work with. Based on how I feel presently, I could be at this a year or so, as an example. The medical measurement for recovery is on a 1 to 5 scale. Three being, you can do ADL’s and recovered full function. Which medically speaking, translates into a person has fully recovered, or this is it folks, and we should get on with life from here. From being at least a 5 most of my life, hearing this is it, or that I’ve fully recovered, while the paper on the clipboard in front of them reads nothing but 3’s at best, I found that hard to accept. I sure felt like I haven’t even made a 2 yet, at that time. Why do they say I’m recovered? For me, it was the word axonal. It’s importent to know that this word influences the doctors and therapists more, then it influences a patients recovery. How things are done, what things are done, and how much money is going to be invested in your case from this point on, will have that word attatched to it somewhere. Therapy will keep tools, devices and therapies away from being exposed, or tried, because that area is done. Axonal damage, right? Let’s do something else. Doctor’s back that up telling you what you are feeling and what should be done to take care of their feelings, not mine, for the most part, and we struggle threw. You have too much axonal damage, so those other things are a waste of time. The patient has all this reinforcement now, and its generally precieved as a sure thing. The “I can’t”, or, “I won’t be able to do anymore” , because of axonal damage thinking starts to prevail. I’ve never point blank said this here, but the rarest of the rarest occurences in GBS, and in the nerve field we are in, is to loose one’s bicepts. Over 80% on both sides. That is the worst of my overall axonal damage. In a room full of people though, I could walk right up to you, shake your hand, shoot the breeze for awhile, and you’d never know I had a disability. A better trained eye would, like one of us maybe, but not the general public. I did exactly this in a GBS meeting once, and listened to some complain how hard walking is, the fatigue, and they had no axonal damage at all, or very mild cases. To them, it’s hell because that’s all they know. One lady, wheelchair bound since the 60’s, said she couldn’t have walked due to axonal damage. Knowing there was no treatment back then, lots of bad medical info, I just cringed knowing she got aced and it wasn’t GBS’s fault. Or the axonal damage. Don’t ever sell the body short. That’s what I’ve learned and am learning every single day. From mild to wild cases, axonal nerve issues shouldn’t be regarded as anything but a way to plan and come to grips with the time factor. Always give yourself a chance. Till dirt is thrown on me, my recovery is ongoing. Everything is pure gravy that happens inbetween.
AnonymousJuly 28, 2006 at 3:19 pm
I had the GBS affect from my knees down and partially in my hands and arms. They told me I had axonal damage. It has been over a year and I have no sensory or motor control to my ankles or to my feet or toes. My physio therapist told me she didn’t think they will ever come back. I plan on proving her wrong. So for now I use AFO’s and am fighting to get mobile and hopefully stay mobile. Even if I don’t get it back once I get walking I can still walk, with the wonderful invention of the AFO’s as they allow me to be able to walk so that I am not stuck in a wheelchair forever. I still need to use a wheelchair but hopefully soon I will be out of it for the most part.
AnonymousJuly 28, 2006 at 5:24 pm
Keep at it. Doesn’t matter if those areas come back or not. A person can work through them, around them, and any way that works, to achieve function. It’s there for the taking. I viewed my legs as natural prostetics for a long time, and AFO’s played a huge part in the process. Sounds like you are well on your way and results are coming.
AnonymousJuly 28, 2006 at 9:49 pm
Welcome to the forum family. You’ve come to the right place for encouragement and information.
I also had the axonal variety of GBS. Paralized arms, vocal chord, but never completely lost the ability to walk, although I was prone to fall alot, if not supported. No hospitalizaton, no diagnosis for 3 mos., no treatment.
I was very lucky because although nearly all of my body systems were effected by GBS, none of my autonomic systems failed. I was unlucky because I got no treatlment, so the disease was not stopped before it did some permanent damage.
It sounds like your sister is already on the road to recovery. This is a good sign. I agree with Racer, don’t worry about the axonal thing right now. Even if it’s true, it doesn’t mean that the damage will necessarily be life altering.
The good thing is that she’s had treatment to stop the damage early.
There is a very good article by Dr. Parry (see previous edition of GBSFI newsletter) that basically sayes that the Undamaged axons will usually grow “sprouts” to bypass the damaged ones, and allow the healthy axons to help control the muscles. I hope I explained that enough to be understood.
Make sure that your sister doesn’t overdo it when she starts feeling better. The fatigue will probably be with her for a long time. Over work or stress will make her relapse or slow down her recovery. Be patient.
Best wishes your your sister’s continued recovery.
AnonymousJuly 30, 2006 at 2:35 am
i have some quite good news, my sister started writing yesterday, she could finally handle a pen and write all the names of our family. your words were all awsome, thanks so much, it seems that this disease is for people who are very kind and terribly generous, and with god’s will, it’s just a short episode in your lives however long it may seem and you will all soon recover, as i could see you are all very nice people, god shall bless you all for your good qualities, and generous heart.
AnonymousJuly 30, 2006 at 9:38 pm
I want to encourage you and through you, your sister, to do as much as she can and celebrate the small victories. And, yes, they are victories. Small things like eating peas and actually swallowing them. Pushing ourselves in the chair instead of being pushed. And the final victory for me, was, post gbs, driving myself for the first time. I am 45 now and experiencing some post-GBS issues, but they are nothing in comparison to the onset and recovery. Following onset and through recovery and post, I would visit with other GBSer’s and help them to keep an upbeat attitude and trust me it is “all about the ‘Tude”
To Small Victories….Nat
AnonymousJuly 31, 2006 at 3:16 am
my sister is really waiting for full recovery. i would like to ask all of you how old are you and how much do you weigh, my sister is 39 she is not very tall but she s a bit fat almost 80 kilos dunno how much in pound. she thinks her heavy weight will hinder her from walking properly,
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