I was first diagnosed with GBS on February 2, 2015, paralyzed to the belly button - given 5 days of IVIG and moved forward with physical therapy 3 times a week. After a few weeks I was able to walk with a cane, but tried really hard not to push it. On the last week of March I went on a vacation that wore me out and caused an acute exacerbation, again, paralyzed to my waist. I was sent to acute care rehabilitation where I had 3 hours of physical therapy a day, and after a slight improvement, I started getting worse than before.
So - the team here decided to try plasmapheresis, six treatments. My first three treatments were on April 26, 27 and 29. I can't tell you how amazing the results have been. I can lift my legs, walk with a walker, the numbness and tingling have descended drastically, I'm so much stronger. Five days ago I couldn't take a single step or stand up on my own without someone holding me. I was wheelchair bound, and unable to leave my bed alone. Has anyone else had plasmapheresis? Were your results this significant? Did the progress stick around??
It has been so promising, but after getting GBS I've learned to not count on any progress as being permanent, because that hasn't been my experience. I still have the pain, the lightning and burning in my legs, but the neurontin is really helping with that and I'm able to sleep through the night again. I'm so happy at the thought of being independent again, able to drive and run errands and pick up my kids and play with them. It's been months of constant pain and frustration. I'm really curious to hear about other people's results from this treatment.
Yes I had a round of plasmapheresis and IVIG treatments. I was paralyzed from the neck down. Couldn’t talk but in a whisper. I now drive and do everything anyone else can. Had one child and pregnant with my boy right now 
I still have numbness and tingling in my hands and feet and get very exhausted.
Hi,
I had 5-6 plasmapheresis as well. My understanding is that the procedure helps flush the white cells and harmful antibodies that are raging as a result of the GBS, so yes, by the time I finished the last treatment, I began to improve for a months. I was 32 years old at the time and went from a wheelchair, needing two pt's with a gate belt to walk short distances, to a walker, crutches, cane (s)... and within a few months I was released from physical therapy and back to work.
So, absolutely, I think your progress will continue long term!!! :-)))
Hey,
Yes, I had both IVIG and Plasmapherisis. The IVIG didn't do anything. I was paralyzed from the neck down for 2 months. Then they tried the Plasmapherisis. Two weeks after those treatments I began getting some movement. I was told that Plasmapherisis cleaned out all of the IVIG treatments. I guess that's why they try one for awhile. Maybe if I had the plasmapherisis first I would have made some recovery sooner. Have some patience and it will get better.
The plasmapheresis results have been so dramatic and SO MUCH faster than my first round with IVIG - and my doctor said that he sees that a lot. I asked if that was the case, why is IVIG always tried first? He explained that IVIG is a lot less invasive, and less expensive. Since IVIG is put in through an IV that a nurse can put in you, and only takes 5 days of treatment, it is the first route tried. Plasmapheresis required a catheter in my neck that had to be put there by a cardiovascular surgeon and has to be done every other day, so almost two weeks of hospitalization.
I was so upset when I relapsed, but now I appreciate it for a blessing in disguise. My progress after IVIG was crawling, but now with this treatment, after three treatments I'm as good as I was at my best after IVIG.
I am in my 13th month with GBS, I had the same experience with IVIG not working & then 5 plasmapheresis treatments which started the healing. I was wrongly led to believe that I would be fully healed by 1 year, by the neurologists at North Shore LIJ Hospital in New York. I recently went to see Dr. David Cornblath at Johns Hopkins in Baltimore (he is on the executive committee of the GBS-CIDP Society). He told me I was doing fabulous for only 1 year because I had a severe case(almost on a respirator). It was quite a revelation to understand that the severe burning in my arms & legs can be very normal for the 13th month. It was made clear that the pain is the nerves healing. I had been doing the elliptical machine for 45 minutes at a good clip & weightraining 6 days a week for several months, but the pain has recently increased & I fatigue sooner. I believe that the healing process has sped up & the burning & fatigue has slowed me down the last 2 weeks. Has anyone had a similar experience? I also weaned myself off of the neurontin because of severe blurry vision.
I had the plasmapheresis treatment. I have recovered quickly but did catch it early. I have my reflexes back as well.
I did not have any IVG treatments at all. I did not lose all my functions, I was close to being put on the respirator but still had some ability in my shoulders arms before the first treatment.
I am fully recovered but need to get exercising to get back in shape.
Yes, I had 10 treatments of Plasmapheresis in 1988. I too was paralyzed - but I was not on a breathing machine. I got better after a few months - so as I look back, I am glad this is the route they decided to take.
Even now I get exhausted at times - but from what I have read, getting GB again is only about a 5% chance. I feel I have fully recovered. I am now 70, so when I do get tired, I sometimes just attribute it to my age.
It has been so many years ago - but I do remember a port was put in my upper chest (called a sub clavian) - maybe that is what they did the Plasmapheresis through. I feel I have truly fully recovered from Guillian Barre.
Nebretta
It has been nine days since I was released from the hospital, which means 9 days since my sixth and last pasmapheresis treatment. I had been doing so well - walking almost back to normal - no cane or walker needed - and I could even climb the stairs on my little stoop with ease.
But today, I feel so weak - my legs feel really heavy. I am still walking but totally stiff and slow and robotic. Is this normal? I thought my progress would continue to be slow and steady, I'm so afraid it's coming back for a third time... can anyone shed some light on their experience after seeing great improvement with plasmapheresis?
I'm scared that now that my plasma isn't getting regularly washed out that my body is producing more of the proteins that attacked my body in the first place. I don't know how to let go of this fear when my body doesn't seem to be cooperating.
In my situation, I was hobbling/walking when I left the hospital. I was out of work for 3months total, though my Dr recommended up to 6months, which in retrospect I should have taken another month.
The fatigue is very real and normal. You are not healed once you leave the hospital and given that you may not need physical therapy thusly others may not see/understand the healing and the assistance you may need going forward.
After awhile I gave in and started asking for assistance to lift things (gallon of milk at the store) that I look fully capable of doing. I just told people that I had an immune deficiency affecting my muscles to quickly communicate my inability at times when I became tired.
I am happy to hear of your progress.