Doctors don’t know, needing advice

hi & welcome,

i’m surprized the 1st ivig worked & the 2nd did not. is she getting any worse? take care. be well.

gene gbs 8-99
in numbers there is strength

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?
Pam

Kristina,

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.

Jerimy

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

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
Stephen

Kristina,
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.

Hi,

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.

good luck to your grandmother. My 5 Ivig’s were given daily for 5 days. That really worked for me.
Susan

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