AnonymousAugust 4, 2006 at 6:41 pm
My husband ( of 9 months) was diagnosed with GB in 1996. He recovered quite a bit, but still has weakness, limited use of hands and legs etc.
The past few months, I have noticed a change in him – he seems weaker than normal….tires faster….
Can GB relapse? What is the treatment?
I am just starting to do some research , so anyone’s info is much appreciated.
AnonymousAugust 4, 2006 at 7:02 pm
Just wanted to tell you I think it’s great that you’re doing all this research on your new hubby’s condition! Congratulations on your marriage, by the way! Since Ben and I were together for almost six years when he got GBS, I’ve been here through the entire experience and got to learn first hand what it was about. I’ve read several posts from GBSers who didn’t meet their significant others until after the GBS, and those S.O.’s tend to seem not as sympathetic and understanding (judging by the posts I read). The most important thing for the spouse to understand is that this is a serious illness, and it is possible (rare, but possible) to have a relapse. Therefore, you probably want to give your husband daily reminders to not overdo it, rest in between activities and try to stay relaxed. I’ve gotten into this habit for the past year and a half, and Ben usually blows me off, but I like to think it helps. If you especially notice that he’s more fatigued than usual, becoming clumsy, slurring his words or has droopy eyes, he needs to stop what he’s doing and go to bed.
I hope this helps!
AnonymousAugust 4, 2006 at 8:44 pm
Relapse could be a possibility, however there are other things you could look at. Your hubby has had residuals as you stated, and these could possibly be ‘flaring’ up (for lack of a better word). This could be due to any number of things like, stress and illness. In many of us, me included, stress seems to be a trigger. Also, there are quite a number of us going through something called ‘post gbs’, which often flares up sometimes decades after the initial onset.
On the gbs-cidp.org website, on the left hand side, there is a link to ‘The Communicator’, In the Spring 2000 issue, there is an article titled [B]Disability After “Recovery” From GBS, [/B]I have copied two paragraphs from that article for you if you have not read them yet, Im sure you will find them interesting. If you havent read the articles, it may be of interest to you to go into the link and read previous Communicator articles.
Spring 2000 Communicator :
[B][B][U]Recurrence of GBS[/U][/B]
Although GBS is thought to be a one-time disease, relapses and chronic recurrent forms can occur. Patients are often concerned about the risk of having additional episodes of GBS. In a study of 220 GBS patients, 15 were found to have a relapsing course, with one to 4 recurrent episodes. The interval between episodes ranged from 3 months to 25 years. Antecedent events such as a viral infection preceded most relapses, and patients presented each time with the typical clinical and laboratory findings of acute GBS. All patients had long asymptomatic periods between the episodes. In a more recent study of 476 patients following GBS, 2.5% experienced a recurrence of the acute illness, with a mean period of 16 months between the episodes (range 2-47 months). One patient had three episodes. The authors found no relationship between the risk of having a recurrent episode and the severity of the first episode. Furthermore, the severity of the subsequent episode did not correlate with the intensity of the first episode. Reaching a correct diagnosis may be challenging in these cases. Even GBS experts may find it difficult to separate a “relapsing variant of GBS” from chronic inflammatory demyelinating polyneuropathy (CIDP), especially early in the course. Recurrent episodes of true GBS, although rare, may occur following similar preceding illnesses, and should be treated in the same way as the initial episode. They respond well to the same established treatment modalities.
Weakness from GBS reaches its maximum during the first two or three weeks of the disease. This is the active or acute phase of the illness. After a plateau period of days or weeks, recovery begins, lasting between weeks and two years. During this time strength improves steadily. Strength and sensory function plateau after about two years. However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS. The same phenomenon has been observed after poliomyelitis (“post-polio syndrome”) and other forms of acute nerve injury. The incidence of slowly progressive late weakness in GBS is unknown, but it is rare. When it does occur, the patient’ s physician must recognize that the new weakness of seemingly recovered muscles does not necessarily indicate a second attack of GBS.
Link to The Communicator
AnonymousAugust 4, 2006 at 9:55 pm
hi cake & welcome,
i know i’m repeating what has been posted by those before me, but they bare repeating. 3% of gbsers will have a 2nd gbs attack. ivig or pp is the treatment. more likely is 1 of these 2; he is overdoing it & his residuals are acting up, mucho rest lying down is the cure or, as he is aging [say after 55], some gbsers do decline faster than a normal person will. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 5, 2006 at 6:55 am
Everyone – thank you for the great information and well wishes!
Michael has been under a lot of stress (his work, his health, his band…and probably his new wife!)
So, if his gbs is ‘flaring up” or he is having ‘post gbs”, treatment is rest, less stress. BUT, how do you know if its not a ‘flare up” and other medical treatment is necessary?
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