question about gbs
AnonymousJuly 31, 2008 at 11:04 pm
i was just wanting to know if gbs is heredity? Or if my kids have a chance of getting this? I heard that it could be . Does anyone know?
Also, is that any grants to help financially? I’m really glad I ran across this site, it really does feel like a family and its helping me alot knowing that i am not alone. It really great to know that I can talk to someone that understands what I am going through.Sometimes it feels like other people aren’t able to understand how devastating this can be to you and your family. Thanks for the feed back.. I also seeing that there are some case where some had a relapse, I know that could be rough and challenging, For the ones that has had a reacurring GBS is it more challenging the second time in recovery. I have learned a great bit from the other forums and found them very interesting
AnonymousJuly 31, 2008 at 11:13 pm
Hi, when I first joined the forum someone posted that she had GBS and so did her sister but can’t remember her name. I search the forum site and found this:
Hope this helps with the heredity question.
AnonymousAugust 1, 2008 at 12:06 am
My understanding is that GBS is not hereditary, but rather an autoimmune disorder. There is good info from the foundation. It is a good idea to register with them as well as the forums. They will send you out an info package with lots of good info on GBS.
Take care Scott.
AnonymousAugust 1, 2008 at 12:24 am
Hi Scott, No gbs is not hereditary. It is an autoimmune reaction everyone has the chance of getting it, but those who already have autoimmune issues are alittle more apt just because they are more apt to getting other autoimmune diseases anyways.
As for your relapse question, I have used my past experiences to deal with each relapse, for me each relapse is alittle different than the ones prior. I have even learned to listen to my body(somewhat:o ) to limit myself when needed and to rest when my body needs it. The limit thing is still the hardest thing for me to deal with personally.
Check online with your state gov site to see about finacial help or local churches, county agencies. Take Care.
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Question about GBS
AnonymousJuly 24, 2008 at 8:17 pm
I was diagnosed with GBS when I was 17 years old. I was only able to move my head from side to side. I recovered but I still use leg braces to ambulate. I’m already 32 years old now and I haven’t regained the full movement of my ankles. My feet drag when I walk but I can move them. I was wondering if I still have any chance of regaining full movement of my ankles.
BTW, I also suffer from depresssion and because of this I didn’t exercise. I became so discouraged of the little progress I was seen that I negleted my body for years.
AnonymousJuly 25, 2008 at 8:50 am
Yes I think you can still improve – I have CIDP, sort of the chronic version of GBS, but there are people on here who have gained strength and mobility for many many years after the initial attack. A lot of whether you can improve depends on whether just your myelin was attacked or whether the axon was also attacked. If the axon was also damaged it takes much longer to heal and quite possibly might not recover. I did have some axonal damage on my right peroneal nerve and thus still suffer from foot drop when I over do things – however it is so much better than it used to be it’s hardly noticable.
At one point I was where you were – only able to move my head a little from side to side – so I can sympathize with feeling trapped like that. I do believe exercise helps in the sense that forcing your nerves and muscles to work together as much as possible makes them work BETTER together. However, exercise does NOT help if it’s to the point of pain or exhaustion and for me that can take less than five minutes kicking my legs in a pool. The idea is to remind your nerves what they’re supposed to do, not beat them into submission. I have found the pool to be the best therapy for me, I am less likely to hurt myself, the water supports me and I’m totally done in ten minutes. 😉 In the winter I would sit with my feet in the bathtub and flex my ankles, before I could do that on my own I used a rubber hose to pull my ankle up and down, back and forth just to remind the nerves what they are supposed to do. Now I can do that on my own and only have to wear the AFOs or use the wheelchair for long distances, or when I’m really tired.
As for the depression, I think it’s worth investigating whether medication would help. Generally speaking depression leads to low energy and we need all the energy we can get because our nerves aren’t as efficient as they used to be.
AnonymousJuly 25, 2008 at 2:20 pm
I agree with Julie, that continued recovery is possible.
I was fitted with AFO’s and used them until I was able to cover longer distances – HOWEVER, I have been caught out trying to do to much and paying the price for not having them on!
I say this knowing that this past spring I sat nursing a VERY sore ankle from having it turn while hunting turkeys. 😮
About the depression – huge side effect of GBS-CIDP. I also agree that I would see if it can be treated chemically. I know in my experience, I’ve “attempted” a couple of different medications before I found one that I was able to tolerate and was comfortable with, and that worked well.
Hang in there, the people on the boards here are ALWAYS willing to listen and talk.
Remember to be safe, and take care of yourself.
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