Doctors don’t know, needing advice
AnonymousSeptember 14, 2006 at 7:16 pm
My grandmother has been told she has GBS, she has been down since March of this year. The doctors finally thought it was GBS in July and had her first IVIG treatment, she walked out of the hospital using a walker. Two weeks later she couldn’t walk again. She got a second IVIG at the end of July but has not had any imporvement. She cannot walk, sit up or feed herself and her doctor says its just the GBS she will have ups and downs. It’s been six weeks since her last IVIG she show not even a hint of improvment. I am wondering if I need to insist on more IVIG or what can I do. She sometimes feels she is dying from this and there is nothing we can do, after reading post on this site and reading them to her we have hope but don’t know where to start or what questions to ask. Any info will be greatly appreciated.
AnonymousSeptember 14, 2006 at 10:50 pm
Could she have gotten a different brand of IVIG the second time? Or is it possible that she has CIDP & not GBS (CIDP meaning the chronic form which is relapsing/remitting.) I was just curious as to whether or not they have tried any steroids on her, as these usually help somene with CIDP, but not those with GBS. Also, if she has had IVIG after being dx with GBS, then why haven’t they tried Plasma pheresis? If you could tell us how old she is & what her coniditon was right before she became ill that might help us a lot with our answers. Maybe they feel that PP might be too intrusive for her?
AnonymousSeptember 15, 2006 at 12:20 am
She is 68 and before this happened she was completley self sufficient. It first started slowly with her feeling tired more quickly, then she fell a couple times and tingling in her hands and feet. They gave her prednisone a 10 day supply, they did not take her off slow while taking the meds she got worse, they put her on it again just to wean her off them slowly. She has not had them since. As it being CIDP the docs have not mentioned anything but reading on this website was the first I heard about it. We see the doctor again tomarrow and I am going to ask about CIDP and the plasmapherisis another treatment we have not been informed about but I found out about by researching online.
AnonymousSeptember 15, 2006 at 2:54 am
It seems to me like they are giving up on IVIG too quickly and that they really should of given it to her more agressively. “usually” there is a large loading dose given at first, then they follow up every 2 weeks for awhile and finally monthly. It took an agressive course of IVIG and high dose Prednisone to finally get me over the hump. As was stated plasmapheresis is also an option if her IVIG and Prednisone don’t work. I hope they get more agressive with IVIG before they give up on it though. Good luck with everything, you all are in my thoughts and prayers. Keep coming back.
AnonymousSeptember 15, 2006 at 9:20 am
sounds to me that this doc is not a good one. it is basic to wean off steroids. every doc should know this. and steroids are counterproductive to gbs. never should have been Rxed in the 1st place. is this doc a gp, neuro, or ? where do you live? i keep a list of good docs.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 15, 2006 at 9:24 am
I think Jerimy and Gene have given you the right scoop…..I wouldn’t give up onthe IVIG so soon as well…each of us react differently to each type of treatment and sometimes it is a hit and miss till we find the right dose and the right time frame for the infussions…….
Best of Luck and God Bless
AnonymousSeptember 15, 2006 at 9:42 am
It took a while to diagnose my GBS, but when they finally did I had plasmapheresis 3 x 1wk. After that I started my slow progression to getting better. You might want to ask your Dr. if he knows of any Docs more familiar with this. I had to go to 5 hospitals and ended up back in the one I had started at for my long stay, I know it can be very frustrating but you have to keep trying to find a Dr. who can understand this. I don’t want to scare you but because it took so long to diagnose me I ended up paralyzed from the neck down and had a trache and feeding tube. If my Dr.’s had known what they were dealing with it wouldn’t have gotten that far. Keep researching and asking ?’s. Good Luck.
AnonymousSeptember 15, 2006 at 10:05 am
Your words, and what the docs are doing protocal wise, indicate to me that GBS wasn’t, and hasn’t been diagnosed. Just said outloud. Is it on her medical chart, as a real diagnoses? Or suspect? Your words tell me what I’ve heard too, which is guessing. Otherwise, 5 IVIG treatments would have been given, not just one and leave. Pin the doc down and ask them if under the same condition, would you stamp GBS on ‘your’ mother?
Just be sure where everybody stands firmly first, then make them take more action.
AnonymousSeptember 15, 2006 at 12:20 pm
Kristina, I am perplexed and concerned. The onset of your grandmother’s illness was in March, treatment was not until about 4 months later in July, she responded initially then relapsed severely. GBS is active for the first 4-6 weeks so such a relapse is unlikely to be GBS.
This pattern is much more likely to be CIDP. Treatment for GBS/CIDP does not cure the disease it arrests further progress for upto 3-4 weeks, hence the need for repeated IVIG, usually monthly sometimes more often. I have CIDP and responded dramatically to the first IVIG but not to any more. DocDavid
AnonymousSeptember 16, 2006 at 7:29 pm
First off let me thank everyone for the advice. Reading the responses to my grandma has made her feel better knowing she is not alone, and I am passing the info on the web site to my grandfather, him and I are the ones taking care of her and I see it taking a toll on him. I may have been misunderstood about the IVIG she had 2 rounds, each one dose for 5 days. We seen the docs nurse asst. and I asked about more IVIG or plasmapherisis, She said that they only do those procedures in severe cases. I did not like that answer so I asked why they have not had us back at the neuro, the one who prescribed the IVIG in the first place, she wasn’t sure so she was flagging her chart for the doc to see. Her response was the doctor can sometimes be busy and some patients can fall through the cracks without family persisitance. We see the doc next week and I will show him persistance.
Again thank you all for the advice and well wishes same thoughts and prayers go back to everyone. I will continue to look on these forums for support for my family and I.
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