I am writing this advice on GBS, firstly out of respect for my husband, Steve, and secondly in the hope that others, through early detection and diagnosis, will prevent what my husband and so many others have endured.
GBS- Guillian Barre Syndrome.
Guillian Barre Syndrome, known as "GBS
" is a young disease by far (17 years). Not much is known about it thus far and there is "NO CURE" for it as yet.
It is characterised by the rapid onset of weakeness and paralysis of the arms, legs and breathing muscles.
What causes "GBS" is another mystery - some say a virus, flu, post op, even a meal which did'nt taste right. Many stories of "could be's", but no one really knows.
It is when the immune defense system starts to attack the nervous system.
The onset can start with pins and needles in the legs,arms, back pain and weakness to the point where you can't stand up, and have trouble breathing. These sensations can spread rapidly within hours or days.
Sometimes "GBS" can be mis-diagnosed because the onset can be similar to having the flu- but unlike the flu, if not treated quickly a patient can end up in a critical condition in a short period of time.
It seems to travel from the feet upwards, causing paralysis to the kidneys, lungs and eventualy the heart. A patient can then be on a respirator to assist breathing or other machines to assist bodily functions.
As in my husbands case, the onset of "GBS" was within a few days with pins and needles in the feet. excruciating back pain, severe chest pains and difficulty breathing. The pain prevented him from standing up but the first doctor could find nothing wrong with him. Eventually at hospital, the neurosurgeon correctly diagnosed the problem and revealed how serious it was.
A lunbar puncture was performed and as this showed a higher level of protein than normal, it indicated "GBS". A nerve conductivity test confirmed the diagnosis.
His lowest point was after 7 days when it was touch and go that he might have to go onto a respirator. At this time his kidneys were paralyzed ( needing a catheter to release the pressure ) and the pain was unbearable.
"GBS" is a neurological condition and normal pain relief has no effect . Steve was given two different forms of medication, one for physical pain and the other for neurological pain.
The main treatment was to be given 3 infusions of "Intragram" ( imminoglobulin therapy) per day for 5 days. The specialist told me that this was all the treatment available and the rest was up to him ! We understood that this treatment was to stop the imflamation around the insulating myelin sheath - the nerve fibres - in turn to stop any further nerve damage and further complications. The quicker the treatment is administered, the less likely hood of going onto a respirator. There have been recorded cases of patients being on life support for several months, before starting on a gruelling rehabilitation programme.
Even though "GBS" is a young disease, there are many more cases being recorded daily. The scary thing is that if not treated early, it can be fatal.( one in five )
(July 2007) (
