So Many questions so little time
AnonymousOctober 7, 2006 at 5:32 pm
Brother (57)just diagnosised with GBS but no protein in spinal tap
numbnessd in both hands and feet never progressed to calves or thighs unable to lift right arm to hospital test etc GBS 2 days of IVIG no difference 3 days later started feeling funny tongue (not numb)still in hospital 2 more days IVIG then lips numb eyes drooped unable to chew
taking only liquids now able to talk but can’t be understood due to lips not moving transferred to rehab after 7 days in hospital
Able to walk right arm still weak feet a little better
NOW today started having pain in hands!!
Is theii GBS?? is there pain as well as numbness? Has anyone ever heard of it progressing this way?
We are devasted ! he is extremely depressed should we try antidepressents MD said if no progress in 7 days will give him plasmaphoresis
Help we are so lost!
AnonymousOctober 7, 2006 at 7:03 pm
The lumbar puncture can throw a ‘false negative’.
IVIG does not always work. Even if it does, there is the possiblity that it simply makes the GBS hiccup, not stop, and so it then starts up again and continues on its path.
He’s in rehab after only 7 days? GBS can take, what is it? 3 or 4 weeks to hit its peak.
Pain with GBS? Oh, yes. Most definitely. I know someone who had no pain but I certainly did have it. I think (though I don’t actually know) that pain is more common than no pain.
I received IVIG and nothing happened. The doc didn’t wait 7 days – though I realise that the wait is to see if the IVIG works. I then received plasma pheresis (PP) and after about the third or fourth go, I felt a muscle move and I improved from there. Sometimes neither IVIG or PP makes a difference – neither are cures, the body must cure itself, but if they work, they can kind of give the immne system a bit of a wake-up call.
Depression and GBS quite often go hand in hand. Myself, I would discuss the use of anti-depressants with the doctor.
Although he cannot talk very well, he can hear. Can I suggest that you tell him you have been on this site, that there are a lot of people here who have met GBS, that yep, it is scary – after all, most have never heard of it until it hits? When you’re talking to him do stay positive.
He’s right in the middle of it at the moment, rather like being in a hurricane. You might tell him that there’s 50 year old Irish woman who has been there and come out the other side – just like most people who get GBS. And he now has friends he never knew.
Don’t forget –
ask anything here
it’s a good place to scream
look after yourself too
GBS also stands for Getting Better Slowly
AnonymousOctober 7, 2006 at 8:09 pm
Tell him don’t give up. My lips and face also went numb after I was in the hospital three days and had already been on IVIG. Sometimes the progression can be quite unusual but then again there is nothing normal about this illness at all. Everyones case is different but definitely be an advocate for your brother. Make sure his doctor is familiar with GBS and is willing to listen to you. We have all been in pretty rough situations but it is great to look back someday and realized we kicked butt. Maybe not the normal way but definitely in our own little way. Tell your brother we are all here for you guys, to vent to ask questions to spend time with others. Whatever we can do just holler.
take care and keep your chin up.
AnonymousOctober 7, 2006 at 9:08 pm
As TA said, spinal tap can give a false negative. GBS can take 2 – 4 weeks to get to its worst point and IVIg and Plasmapharesis is given to try and stop further damage to the nerves. Often the benefit of either one of these do not show up immediately, and do take time. Both treatments are only given during the active phase of the illness i.e. when the nerves are being attacked, so once improvement has stated, I believe, the nerves are not being attacked anymore. Having said that, from what I understand, he has improved slightly as he is able to ‘talk’ in a way, and his arm seems to feel better. Many sufferers have excrutiating pain and numbness at the same time, so this is normal if it is GBS that he has. He needs PT and probably OT if he isnt getting as of yet.
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