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Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Nov 6 8:25am | Replies (1517)

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@kimh

Hi @jessienalu
I want to say "welcome", but....instead I will give you a quick recap on my experience and hopefully it will help you when you get to your gastro appointment.
Two weeks after suffering a severe back trauma (bad fall on black ice), I came down with pain in my right kidney area that radiated to my right abdominal area. After 3 CTs, a week long hospital stay (trying to get the pain under control) and a surgical biopsy (to rule out lymphoma), I was formally diagnosed with MP. I was put on steroid therapy (Prednisone) for about 6 months. I was on 40 mg. daily for three months and began weaning down 5 mg. weekly until I started suffering from esophageal spasms (side effect of Prednisone) when I was hospitalised for another 10 days and eventually taken off the Prednisone. While Prednisone brings it's gifts (weight gain, sleeplessness, facial hair, moods), it also put me in remission for about 2 and a half years. And I mean complete remission where I was beginning to forget that I even had MP. Unfortunately, after a stressful situation (my father was diagnosed and ended up dying of cancer all within a short 3 month period), I fell out of remission. That was August 2017. I am still off work trying to get this thing under control. At the moment I am on (still!) Prednisone 5 mg. daily, Tamoxifen 20 mg. daily and Azathioprine 150 mg. daily. This 'cocktail' has given me some improvement pain wise however, every medication brings side effects which I am willing to deal with as long as the pain begins to go away. I hope that this helps you. Someone on this site also recommended a book called, "How to be Sick" by Toni Bernhard which comes from a Buddhist point of view. I am not a Buddhist, but found this book extremely helpful while trying to deal with a mind that wants to do so much combined with a body which restricts me from doing those things. I hope my experience can help you.

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Replies to "Hi @jessienalu I want to say "welcome", but....instead I will give you a quick recap on..."

From the bottom of my heart, thank you for taking the time to reply to me.
I am so sorry to hear about your pain.
My gastro appointment got declined because «my symptoms are not newly accured». So now my doctor that has no experience or education about this is going to follow me up. I have not been to work for 5 weeks. In 4 days I’m going back to the doctor and honestly feel like there is no point. How is the doctor going to help me when she knows nothing about this. I just have to push her to force my gastro appointment forward. I have a right to be treated by a specialist when the doctors don’t know what to do!
Thank you so much for writing your experience to me. I will read it and show it to my doctor. It will be so helpfull for me to have it with me, so thank you again. I will also try to get a hold of that book.
I wish you the best and pray for your recovery.