I have Guillain Barre, how do I cope with the longevity of GB? is there anyone e!
Question: GBS is a neurological syndrome that causes the casing your nerves are in to be stripped. in addition to lose of motor functions, It causes paralysis. I have chronic GBS or CDIP. CIDP is rare, that's why I need to know someone going through the same syndrome. I need to know what I'm feeling both physically and more so emotionally is the norm. The syndrome is rare and there isn't much known about the residual and long term effects. It's tough for me and my family. They feel as alone as I do.
Answers:
If you haven't tried it already, ask your neurologist about IVIG. I have truly seen it work miracles. They might be hesitant to use it because it is VERY expensive, but I think it is worth a try.
Other Answers:
I have actually known 3 different people that had GBS- which is unusual because it is such a rare disease. One of the people was an ex-boyfriend, and he had it about 12 years ago- he is now completely fine! It took him about 2 years to recover, but he did recover. The other two people had similar recovery rates- both are fully recovered. I recommend looking online for any info you can get, and maybe find a support group for people with the disease- it's important to talk to others so that it's easier for you to cope. Good luck, I hope you feel better soon!
Here are some resources I found. I am sure you have found them too, but if you haven't I think that it maybe a good start to finding people who are in situations similar to yours. One is in Ireland/England the other an international foundation. I am betting that they have a good support system and advice that may help you. I wish you the best of luck, I hope this can help.
Source(s):
Ireland:
http://www.gbs.org.uk/index2.shtml
International Foundation:
http://www.gbsfi.com/chat/index.html
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