My sister was diagnosed after an upper respiratory infection after returning from Hawaii , she had the usual numbness and tingling of the hands and feet. She has gotten worse she is on a ventilator for one week now. They have tried immunoglobulins, two rounds five days each and are now trying plasmapheresis. Can anyone comment on how long before we see any improvement? I have read about treatments and know each patient is different, but every day we get more frustrated. Considering a move from small community hospital to university hospital.
It's impossible to predict how fast she will respond to treatment but usually younger people recover much faster and almost fully functional. In my case I was in a coma, then after awakening from a coma was fully paralyzed for 18 months on life support, then 2 more years in a nursing home rehab setting. And I am still in a wheelchair but don't let my case scare you. I think mine is one of the worst, most people recover and are able to walk again, if you read about other peoples experiences on this board you will notice most are walking around but deal with other issues common to this condition like pain, numbness, sleep issues, and others. I saw a case on YouTube where a guy recovered in less than 2 weeks and walked out of the hospital. I hope your sister is that lucky, just talk to her and let her know what is going on and that she will get better, no one did that for me and I was frightened for a long time thinking it was hopeless. What she needs now is love and family support and for her visitors to talk to her. After waking from my coma I was fully aware but unable to move or speak and it was nice to have people talk to me although no one really explained in depth anything I really needed to know at that time. So I think that is very important, that she know exactly what is happening, why, and that she will get better and to never give up hope, and of course that she has everyone's support and love.
They started me with immunoglobulin also and then went to plasmapheresis when that didn’t work. The did the plasmapheresis every day for 5 days. I was in a coma for 6 weeks. I’m now 4 months out and can walk around the house with a walker but still use a wheel chair when leaving the house. Be patient, it can be a long involved process. Be careful of going from a small hospital to a large one, the individual care I got along with the feeling that the nurses and aids really cared about me as a person did as much for my well being as the actual treatments. Once they get you past the crisis point all that can be done anywhere is care until you recover.
I was put on IVIG from the first day. I was told my GBS had to run its course. So by the 5th week I was totally paralyzed from the neck down. Then slowly, real slowly I began to heal.
Hi Mary, I was told that the IVIG and/or plasmapheresis tend to slow or stop the progress of GBS. Once a person begins to show improvement, then you know that person is on the mend. It is very individual to each person.
Regarding a move to a University Hospital, this may or may not be beneficial. Make sure you have the right doctor and a hospital that strives for nursing excellence, such as Magnet status. I was treated initially at a University hospital, one of the top in the nation. The problem initially was that I had a neurologist and hospitalist on my case and they ignored many symptoms, ultimately sending me home, unable to walk. I returned to my local ER 36 hours later, was sent back to the University hospital but under the care of a different doc. I was diagnosed immediately and began IVIG within 3 hours. Ask around, go to the Internet to compare hospital and physician ratings. These may help you decide.