Help make a difference.
Hi, I was recently diagnosed with MNGIE. It took me doing all the research and finally seeing a geneticist. This is years after I first started showing symptoms. This site was the most help.
I was diagnosed with MNGIE after years of suffering. I had many unexplained symptoms, mainly GI dysmotility. Recently I have been feeling better. I have more energy and am hoping to introduce some new foods shortly. I have tried IVIG therapy and stem cell therapy. I live in San Diego. I would love to talk to you about my experience and offer you hope.
Was reading all info I could get and noticed that you are a MNGIE patient, my wife has been diagnosed with this and I am searching for all info I can get on treatments and what to expect from this disease, both short term and long term.
My prayers go out to you also