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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 18, 2024 | Replies (1519)Comment receiving replies
I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have had multiple digestive problems(extreme pain, nausea, etc) and lost 32 lbs. I have heart palpatations have vitamin absorption problems, extremely low in B12 and D, and worst of all now have extreme anxiety and panic due somewhat I believe because of the change in my gut makeup (serotonin, etc changes) and absorption problems.
My gastrointestinal doctor was of no help and passed me off to another of no help who sent me to a surgeon who did not want to do a biopsy because he wasn't comfortable doing it and feared doing more damage (to his credit).
I live in Pensacola, Florida and feel like I may as well live on the moon because no one here knows anything about this disease.
Mayo Jax is 5+ hours away(don't know if they have a mesenteric gastrointestinal doctor) and now with the anxiety and panic travel is extremely hard.
Anyone in this area have any doctor references?
Replies to "I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have..."
To "royal" in Pensacola, Florida: I am sorry you have this disease. I am
from Michigan and I have it too and I have many of the
same symptoms as you. You may find it quite helpful to join a very
supportive and helpful private Facebook support group called "Sclerosing
Mesenteritis."
In order to join you can private message Lisa Schwart from Tulsa, Oklahoma. You can private message her and she can add you into the group.
You can also send in a friend request to Lisa Schwart (the photo is of two
women, herself and her daughter) and then you can message her to join the
Sclerosing Mesenteritis Facebook page. I hope that you can find successful
treatment for this disease.
Sincerely,
Vivian
Connect
Hi @royal! Welcome to Connect. I'm sorry to hear about the difficulties in your journey to find answers. Hopefully this forum will provide some support! Just an FYI, if you were interested in trying to get an appointment at our Jacksonville location, you could call 904-953-0853 to see if we have any doctors that could help you find some answers!