Mom is going through this now
AnonymousMay 15, 2007 at 9:57 pm
I just joined this forum in hopes to gain insight and understanding while my mom is battling what we think is GBS in Victoria BC. The doctors are not acting like they are convinced and they continue to take more tests. Mom first had symptoms in March and by April, after several trips to emergency, she was finally admitted in extreme pain and with very limited mobility. She cannot walk now and has been in hospital since mid-April. I read “Learning to Walk Again” and found the book to be very similar to what my mom is experiencing.
Mom has started gentle OT, but no other treatments were offered.
from Calgary, AB
AnonymousMay 16, 2007 at 11:49 am
Mom has had at least two different neurologists look at her. To date, I believe she has had MRI, Spinal Tap, various nerve tests, a cart load of blood tests. I was under the assumption that the spinal tap would be the definitive test, but the doctor said it didn’t show anything….the language upsets me. I have to rely on my dad to share information with me in Calgary….he is older and of course, it is tough when he is quite worried about my mom.
The doctor said it is too late for any of the blood treatments. It seems to me that they are just observing her now. Either she will improve or she won’t. I want to scream at someone and say…”Who is the leader here?”….”If you can’t figure it out, let’s get someone in here who is the EXPERT on this syndrome”….But, there is a fine line between being too pushy and trusting the doctors to do their job.
AnonymousMay 16, 2007 at 1:39 pm
Welcome! One thing to know is that with GBS the recovery is very, very slow. It is important to be an advocate for her, but sometimes there isn’t much they can do. She will need lots of rest for months to come. And don’t forget to take care of yourself too!
AnonymousMay 16, 2007 at 2:18 pm
Would it at least be possible for her to get a 5 day infusion of IVIG? I know that after a certain length of time that IVIG does nothing but stop the progression, but because of her slow onset it could be possible for her to have CIDP. Have they even considered that? Is she at least not getting any worse?
Having said that, if it is only GBS & not CIDP, then time will have to be the treatment. This illness requires a lot of patience, unlike so many other illnesses. Wishing your mom a complete recovery.
AnonymousMay 16, 2007 at 11:59 pm
[QUOTE]I know that after a certain length of time that IVIG does nothing but stop the progression[/QUOTE] I was under the impression that this is all IVIG does anyway although the sooner the treatment, the less damage is going to be done.
It is also my understanding that GBS “peaks” at around 4 weeks so maybe that is what the doctors mean about it being too late to try treatments. If the damage being done to nerves has already plateaued then there is no longer a need to halt the progression IYKWIM. Not necessarily my professional opion (lol) just trying to understanf the possible logic behind it. Just as they say there is no benefit from a second course of IVIG … when it is your loved one lying there you probably want to try anything and everything but sometimes there is no medical benefit.
AnonymousMay 17, 2007 at 6:48 am
all ivig can do is to attempt to ‘kill’ off the bad gbs antibodies in the body. 4 weeks is only a reference #. if there is still decline, then ivig can help regardless of time. also if future decline starts [not a setbaack], ivig should be given. take care. be well.
gene gbs 8-99
in numbers there is strength
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