Acute vs. Chronic GBS
AnonymousJune 8, 2006 at 6:21 am
Many of you have corresponded with me regarding my brother Frank. I posted the topic “new to this….” Frank is doing better, off the Ventilator and just receiving oxygen. He’s had more movement in his right arm and we’re pleased with his progress. The hospital ordered more P.P. so I’m hoping that means it’s working. He’s being transferred out to an Acute long care facility (as soon as the insurance can approve it).
Frank told me last night that the Doctor mentioned his case may be Chronic, not Acute (as they first diagnosed). I’m trying to understand what has made them question the type….I know I shouldn’t get too hung up on this, however Chronic does mean “re-occurring” and so that alarms me. I also thought I had read that with Chronic the symtoms present slowly and with Acute they are aggressive. Frank’s numbess, etc. came on really fast.
Does anyone know they determine Chronic vs. Acute.
AnonymousJune 8, 2006 at 7:28 am
In this case, I believe all they are saying is that they think his case will improve, and he’ll recover. Which keeps it in a ‘chronic’ catogory. In my case, with known axonal damage, my recovery is ‘acute’. Long lasting and long term. In the medical world, cronic can mean a lot of things, of which ‘re-occuring’ isn’t one of them as applied to GBS. If it was re-occuring, then the disease and diagnoses can change, like to CIDP. Right now, that isn’t the case. Wait till you get the medical definition of recovered. You’ll wonder what the med people are thinking on that one too.
AnonymousJune 8, 2006 at 8:28 am
Hi Rose, the difference between chronic and acute gbs is varying, because there are different neuropathies under the gbs umbrella. for instance, i have had 4 paralysis events since aug 05, i have been told by a couple drs that its caused by gbs, and i have been told by a few drs that once you get gbs you can’t get it again. it is crap that you can’t get it again, there are no antibodies produced after you have gbs once, like there is in the case of chicken pox, it can reoccur as many times as it wants to. since there is no test for gbs there is no vaccine for gbs and the drs don’t know exactly what causes gbs, they can not tell anyone they will recover completely and in a certain time frame either. there are reoccuring forms of gbs, again that falls under the neuropathies section of this syndrome, there is also many neuropathies that fall under the cidp umbrella. cidp is also known as the chronic form of gbs, cidp can be diagnosed with a muscle/nerve biopsy, where as gbs is not. there are also chronic/acute onset forms of gbs and cidp, meaning they can reoccur in a rapid onset of symptoms. in my case i can, and have twice gone to sleep and woke up 1 1/2 hours later to being paralyzed from head to toe. it has also come on twice in less then 30 mins, where i can feel the numbness creeping up my legs and arms and hitting the body, all coming to a stop at the top of my head. i still have not recovered past a certain point in between events.
i hope your brother recovers to the extent of a new near norm. it might take time and patience, but the odds are in his favor. slow and steady will get him there. a positive attitude will take him farther. give him a hug for me, i’m glad to hear he is improving. i hope he has a new bit of recovery everyday, but don’t get discouraged if there are days he seems to go backwards abit, that is not unusual either. rest is extremely important at this stage of his recovery, pushing himself can only take away some of his progress. he needs to listen to what his body tells him he can do, and take it easy when it tells him to slow down. hope you are doing well also. your support is a great positive in his life right now, also. don’t take it personally if he gets depressed during his recovery stages, that often happens, just know he is going through alot of changes with this syndrome, there will be good days and bad days. take care.
AnonymousJune 8, 2006 at 11:09 am
the fact that they Rxed more pp makes me think they do suspect cidp [chronic gbs] as opposed to the original Dx of gbs. cidp is largely Dxed by observation over time meaning the patient continues to get worse overall despite the ivig or pp. if he is holding his own &/or showing even the slightest improvement, then i doubt their concern. keep us posted on this thread. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 8, 2006 at 12:15 pm
I think where I’m confused is that the diagnosis on his disablity form says Acute Inflammatory Demyelinating Polyneuropathy – So, that’s AIDP? But whenever the doctors speak about his illness, they say GBS. When I have asked them if he has CIDP, then don’t really respond……so again, I guess I shouldn’t really get so hung up on it, but I’m trying to understand what is happening to him, but quite honestly I think they just aren’t sure yet.
He is getting better, he’s being moved today to Acute Long Term Care Facility – so now he has to get used to a new place, hope all will go well with this transition.
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