Read In Your Native Language

Sunday, October 13, 2013

A.S. Face 0080: Edwin Menting

A.S. Face 0080: Edwin Menting

Ed
I’m writing this on behalf of my fiance Edwin Menting.
Edwin is thirty years old and found out not more than three years ago that he has AS. It was a difficult time getting to his diagnosis as he was met with several doctors(emergency and otherwise) viewing his complaints of extreme pain as drug-seeking behavior. Upon receiving his diagnosis of AS and lumbar spinal stenosis via an MRI, our past doctor candidly posed me the question:”Now that he has his diagnosis, is he happy?” I couldn’t believe the lack of compassion, in fact the downright venom, in her voice for someone who had just been diagnosed with a serious disease. Needless to say, we didn’t keep that doctor. We switched counties and found an amazing rheumy who listened to his story, believed his pain and offered suggestions to make it better. She put him on Enbrel but also diagnosed him with fibromyalgia thus presenting his need for Lyrica as well. She graciously gave him percoset for his pain without any question only a request that he allow her to closely monitor him for unsafe levels and dependency which we agreed to, appreciating her dedication to making sure he would be fine. For about a year he cycled the Enbrel weekly as prescribed and treated breakthrough pain with the percoset. Shortly after that year was up, the doctor did some tests and pulled his levels only to find out that the Enbrel had done nothing to help his AS. Circa that same time, Ed began to have blackouts where he would wake up and be sick to his stomach. After several ER trips, he was refered to a neurologist who determined he was suffering from temporal lobe seizures. After a prescription of Depakote, he seems to be improving and is now trying out Humira as an option. He seems to be responding well but is experiencing shorter terms of remission. He spends his days drawing, hanging out with friends and caring for our beautiful daughter whom is his best friend!He is a wonderful father and a devoted husband-to-be. I’m proud to have such an amazingly strong person in my life.
My name is Katrina and Edwin Menting is my strength, my love and my Spondy.
Wisconsin United States of America

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