Reply To: Scared at 82

October 20, 2018 at 12:21 pm

Iam sorry to hear about your mom’s diagnosis, but there is light at the end of the tunnel.
My first question is do you live where you have a good neurological group? We felt fortunate that we had Barrows Neurological right here.

My husband was diagnosed at age 76 with GBS…3 years ago. (You will see my post from April 4. 2016) He was an active, healthy Marine who had no health issues other than slight high blood pressure. For right now I will spare the details of the onset of the GBS, but he had a very severe case and not only was paralyzed, but was on a ventilator for a more than a week. Today he is walking, talking, taking care of himself once again with the only residual being his feet tingle ALL the time. And by the way, his blood pressure is completely normal with no meds!

Plasmapherisis is the treatment that was used initially. It is sort of like dialysis for kidney failure except this removes the tainted plasma and clean plasma is put back in. There were no side effects from this—-though it did make him very cold for a little bit. Warm blankets took care of that! He had the plasmapherisis for 5 days, then the IVIG for 5 days. There was discussion to do two more days of the plasmapherisis…hind sight tells me that it could have been the right thing to do. I say this because he was getting better and then suddenly could not breath (the GBS hit his diaphragm/lungs) and at that point he was intubated and then was put on the ventilator.

Again, the good news: going from being totally paralyzed, unable to breathe, eat, speak, close his eyes, etc. to be 95% normal…..well life is more than good.

I do know that studies/research (Stage 2 trials) are being done using Eculizumab, but I do not believe it is approved at this point. I would check it out if we were on the front end of this diagnosis. Again, plasmapherisis……I would find a doctor who would get this started immediately.

The second part of GBS recovery once the person is out of the danger zone and able to move at any level…is to do the physical therapies. Whatever is asked of the patient, regardless of how difficult or painful must be done. That mentality, doing whatever it takes, is what got my husband where he is today. It was grueling for him and for me to watch, but it certainly paid off.
He still says that he never once thought about not pushing through to get where he wanted to be.

Please stay in touch with us regarding your mother’s condition. We will pray for both of you and her doctors. Tell her that she will recover…..but as all our doctors told us over and over, Time and Patience were going to be our friends.