View Full Version : guillaume barre syndrome
A close relative, age 65, has just been admitted to hospital for investigation of what is thought to be this unpleasant and debilitating syndrome. I gather it is not that common and a search within Pprune doesn't give any results. Does anybody have any personal knowledge of this syndrome, please? Apparently also has an alternative spelling - Guillain-Barré syndrome. Thanks
gingernut
4th Aug 2007, 06:02
No personal experience, but some technical stuff can be found here. http://www.gpnotebook.co.uk/simplepage.cfm?ID=-872022009
I've only come across it once, and the patient did very well, but the treatment was prolonged.
Thank you gingernut. There is a lot of info out there but that was a particularly helpful link.
scooter boy
4th Aug 2007, 06:19
IIRC from my medical school 17+yrs ago it is thought to be a viral condition and generally leads to temporary paralysis (very occasionally requiring ventilation and intensive care if the respiratory muscles are affected).
I have met sevsral patients who have had this and made a full recovery so I wouldn't be too pessimistic,
SB
It's Guillain-Barré syndrome, named after two french neurologists who described it in 1916. Most patients recover but it can be fatal and some are left profoundly disabled.
It is not a single disease entity but describes a spectrum of neuropathy - illnesses of the peripheral nerves caused by a rogue immune reaction to a previous infection.
About 25% of patients become so paralysed that they need mechanical ventilation. These patients tend to do less well but I know many who have been ventilated and made excellent recoveries.
It would be reasonable to be optimistic.
Andy Leitch
Chairman GBS Support Group [UK]
I had that in 1981. I got up one day and my legs didn't work properly, so by the end of the day I was in hospital. After a few days I'd completely lost the use of my legs. By the second week I was taken to another hospital and put into intensive care as I was getting close to the stage where I would have needed to go on a respirator.
Luckily for me, this didn't happen.
As well as losing the use of my legs, I had only partial movement of my arms, I lost the fine sense of touch in my fingers (which made it hard to read as I couldn't turn the pages properly), I couldn't swallow properly so I had to be fed through a naso-gastric tube. The left side of my face was heavily weakened, and I could only really focus on things in front of me.
I spent two months in hospital, towards the end of which time I had to learn how to walk again (which with muscle wastage and tendon shrinkage Really Hurt!) and graduate from a walking frame, to crutches. Then after two months I was sent home, and had an ambulance take me to physiotherapy a few times a week, until I graduated to a walking stick and was able to go on a bus.
It was about nine months after I came down with it that I was able to walk without a stick.
It's not pleasant, in fact I'd have to say it was the worst thing that ever happened to me. But I made a full recovery.
Best wishes to your relative, A2QFI.
As Alamo says, be optimistic!
A fairly obscure illness and 5 replies in 24 hours including helpful comment from the chairman of the support group and a harrowing account of your experience of the illness (DOP). My relative has had a very stressfull 6 weeks including long haul to LA twice to deal with business matters and this may be relevant. They were ill at home for 3 days and then admitted to hospital, not by ambulance, so the onset was severe but gradual. Very many thanks to all who have posted here; I will give an update after they have ben seen by a specialist which will hopefully be Monday.
FatFlaps
6th Aug 2007, 09:00
GBS is becoming more and more often seen in South Africa, predominantly in the rural hospitals and amongst those who are immunologically compromised.
It is a very frustrating condition to contend with as there is (to the best of my knowledge) no mental or cognitive fallout and the symptoms are purely physical - this in essence leaves the patient "locked in" to their body.
There are 3 phases of this condition which are experienced - obviously deterioration, plateau and recovery - the duration of each phase varies between patients. Not all patients are ventilated but a lot are. It requires intensive physical therapy throughout to ensure that the lungs remain clear and no contractures develop and a multi-disciplinary approach from the specialist, speech, PT and OT will produce the best results
PM me if you would like more info.
FF
A2QFI
11th Aug 2007, 08:42
Very many thanks for the helpful links and personal experiences posted to date. Relative has been in hospital for a week with not much progress in diagnosis as the neurologist is on holiday until Tuesday. However, a lumbar puncture and scan (I don't know of what) were scheduled for yesterday. I don't know if they took place or what the results were but a major abnormality was picked up in a blood test and there is thought that it may be something picked up during the second trip made to LA about 3 weeks ago More info when I have it but it seems that it may not be GBS after all which is something of a relief, although whatever it is seems very unpleasant.
I am going visiting my relative until 17th August, in hospital or at home, and will post an update on test results etc then. Again, thanks for answers and interest shown in this case!
A2QFI
16th Aug 2007, 18:51
My relative has been in hospital for 2 weeks tomorrow. There is still no diagnosis but some things have been eliminated and these include GBS, Lymes disease (spelling?) and leukemia. There are irregularities in the spinal fluid (further test to come) and a blood sample not yet analysed. They are going to a specialiast neurological unit on Monday for a further tests and scans. Feeling better but still not well and not being sent home!
A2QFI
25th Aug 2007, 19:48
Final update and thanks again for the helpful posts. My relative is out of hospital after 3 weeks amd still not feeling anywhere near 100% healthy or fit. Diagnosis is now Lyme Disease and treatement seems to be live with it and manage it. It was apparently common in the New Forest but the ticks have edged North over the years and it can be caught well North of the original known area of possible infection.