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Sat, May 4 3:23pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I send deep felt prayers and hope that you will get through this. I have to say you are an incredibly brave & inspiring individual going though what you have and being able to persevere- and with humor. You WILL be ok. 🙏💛

Fri, May 3 3:23pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

And yes, I've also had horrible back pain too. I take Tylenol & warm baths with magnesium bath salts. It helps to relieve the pain a little. I know, it's horrible. Make sure when you see your specialist to pre write out your questions/
concerns/ issues. It helps a lot in getting better care /responses. Good Luck😊

Fri, May 3 3:15pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi! Yes, it took about a week for me to get accepted to the Facebook group but you should hopefully be soon. Make sure you messaged & contacted 'Lisa Schwart Tulsa'. She says herself she gets busy but she is great about getting back to you & ultimately getting added on. Re message her several times- as I had to- if you don't hear back from her. 👍🙏

Sun, Apr 28 12:51am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello, could you tell us how you were successfully able to get a referral to the Mayo Clinic to be seen? I've had trouble getting my Drs to approve one. Was wondering, if you may know, are Dr referrals required and how easy or difficult is it to be seen by a GI at Mayo?Thanks for sharing your story & it's wonderful you've had a positive outcome.

Sun, Apr 28 12:38am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi. I also was diagnosed with Mesenteric Panniculitis & feel & have many of the same symptoms you've described. As it's so rare many of us feel alone as you do. There is a wonderful & helpful Facebook page for those suffering from this. It's private to protect our medical information & to speak freely. Message "Lisa Schwart Tulsa" & request to join the group "Sclerosing Mesenteritis". It's been really helpful emotionally and with what type of medications work best, where to find doctors who can help, and to just talk about what you're going through with others providing suggestions, help, and solace. You're not alone & you can get help 🙂

Sat, Apr 20 3:23pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi Jolied, thank you for your helpful and informative post. It helps me put this MP diagnosis and what to expect more in perspective. And your advice regarding diet and limiting exercise is something l'll be more aware of. I hope you are and stay as well and as pain free as possible. You seem to have a control and self awareness of this disease that I will very much try & adopt myself. Thank you for your kind help💛Di

Thu, Apr 18 9:59am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello, my GI informed me yesterday my recent MRI shows "some scarring" & that I'll likely have this disease for life. Is this the same as "fibrosis" and does it indicate I'm in the more advaced third stage of this disease? Also, is one more likely with this disease to acquire a cancer/malignancy throughout their lifetime? Does it mean a more shortened lifespan? In terms of medical care for MP/SM what is the usual yet best proactive approach from this point on regarding requesting preventative/beneficial/ repeated lab tests/ imaging scans/ or other? Thank you for any & all valuable advice/help/experience/suggestions & my best & prayers to all suffering from this. 🙏