Registered: 1 year, 2 months ago
From GBS to CIDP in 18 years Hi, my name is Maylo. I am 30 years old, based in Switzerland and would like to share my story with you, not to give up and to get satisfied with half baked solutions, because it is possible to get back to 100%. I got diagnosed with 4th grade GBS in 2001 by the age of 11y. It took only about two weeks for a complete paralysis. Because of the intensity of the paralisys and my weak physical condition, the doctors decided to do a IVIG treatment of 1g/kg. The treatment showed first results after about half a year, when the paralisys began to ease up. It took me 5y from outbreak to full recovery, with intensiv physio & ergo therapy. There was almost no consequential damage left, despite of the reaction of my reflexes but which didn't bother me at all in daily life. I was able to work out on a regular basis and live my life like everybody else, up until the second outbreak, 18y later. Yes, it is a very rare circumstance but it happened. 18y later, with the age of 29 I got a relapse of the 2nd grade. Once again, it put me back in the wheelchair. It took about 1 week to the peak. Due to the success of the IVIG at the first episode, I got treated again with IVIG, but as the outbreak was very rapidly processing, doctors decided to treat me with 2g/kg. The treatment showed quick improvement for a couple of weeks, until the second relapse happened and showed that it wasn't just a 2nd episode of GBS, but CIDP. The MRI actually showed the first signs of CIDP and it then has officially been confirmed after a the 2nd liquor test. Within 2 months of stationary rehab, I was able to walk again and deal with daily routines. 7 months later now I am at 80% of my physical abilities again an I am still working on getting back to 100%. I am still on IVIG treatment every 2 weeks, receiving 80g of PRIVIGEN, which still helps me a lot, to ease the sympthoms and go on with the recovery. Like the first time, also the second time, the right part of my body was affected worse and I guess there might stay some limitations. Maybe forever. In the past half year, I learned to deal and live with the limitations and most of all, listen to my body. There is always a way, as long as you want it. I am open to help, give answers or feedback. There are a lot of similarities from the first to the second outbreak, which I was able "to map" and come to a bunch of conclusions.
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