Edwin Menting

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

3 Responses to “Edwin Menting”

  1. Thank you for sharing this story for many, many reasons. My personal reason is that right after starting Simponi, i started (and am still having) seizures. The Neuro said she would not dx them as seizures because I am too young (at 36) for that diagnosis. So, I’ll continue seeking answers. I was offered depakote by my psychiatrist for the seizures but the Neuro (who refused to dx me despite a full 24hrs worth of seizures on EEG !) said depakote would make me sicker. Now, I’ll ask my other docs – consider it. Especially if it means I can go back on biologics.

    So you may have given me MY life back. Thank you!!!!

    P.s. So sad many of us are treated as drug seekers. Been there too….

  2. Dear Katrina,
    Thank you so much for sharing Edwin’s story with us. One of the things that I find that tears my heart apart, is that many of us do not have the support from family and friends. You are an amazing person.
    Sincerely Cookie

  3. I was diagnosed with AS this year. My pain started in my right leg when I was 18. That pain kept coming and going, switching legs and slowly getting worse. I joined the Wisconsin Army National Guard when I was 20 and the pain stayed pretty consistent through 6 months of initial training. The pain in my legs started getting worse near the end of 2011. I was going to a special clinic to get diagnosed, the Neuroscience Group, and they first thought it was piriformis syndrome, then after a steroid injection didn’t help they did an MRI on my pelvis and found inflammation of my sacroiliac join on both sides. They finally did a blood test to check for the antigen HLA-B27. It came up positive and they referred me to a Rheumatologist to confirm the diagnosis. He spent 10 minutes with me and blew off my concerns of pain in my pelvis and back when running. Now, in the last few months I haven’t been able to sleep due to severe pain in first my lumbar spine and then more frequently in my Thoracic spine. I’ve tried correct sleeping posture and just take 600mg of Ibuprofen before bed. Going to the Chiropractor has helped only a little. I hope to find a better way to manage the pain as I get older. I’m also on 1500mg of Depakote a day for a mood disorder, but has not helped the pain any.

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