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Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)

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@jessienalu

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.

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Replies to "From the bottom of my heart, thank you for taking the time to reply to me...."

Hi @jessienalu, I agree that you absolutely need real help. Having said that, I am my GP's and GI's only patient with this disease and they are coordinating my health care. As long as your doctor is comfortable reaching out to colleagues for advice, you should be okay. There is no cure unfortunately and not much reading out there, but we can all share our experiences with one another to help. The one thing that I have noticed is that this relapse is quite different than when I was previously diagnosed almost 5 years ago. There is a lot of trial and error involved as well as keeping stress to a minimum and certain physical activities as well (sweeping, cleaning windows and....sad to say....yoga!)