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Mesenteric Panniculitis or Sclerosing Mesenteritis

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

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@aland

I can relate to the horizontal pain. I toss and turn to find the right position bto ease the pain, sometimes morning comes and I feel like I'm still trying to fall asleep. Two CT scans, the second with contrast, showed numerous enlarged lymph nodes throughout with Mesenteric root showing increased attenuation and encapsulation. My pain radiates out from kind of my left side out to entire abdomen. Sometime it feels like pressure pointing in, sometime like alien trying to bust out. I was given Prednisone treatment once and I had some relief, but now my gastroenterologist and primary care want to send me to pain management and follow up CT in March (6 months). All my blood tests have been normal, liver, kidney, normal. Ultra-good good colonoscopy. Everything hurts, nobody cares.

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Replies to "I can relate to the horizontal pain. I toss and turn to find the right position..."

Please send a one-page letter about the tests you have had and what doctors have and have not done for you and request an appointment preferably at Gastro Dept., Mayo Clinic, Rochester, MN, Attn Drs Alexander or Pardi. Google for their phone and Fax

@aland Our symptoms and test results are very similar. Mine is completely left sided. My long time GI doc got so frustrated a few years ago that he said he will only see me once a year for a check up. There are only two GI practices in town with about 40 docs total and no one else would see me saying I was receiving adequate care. Eventually it was found that they have an agreement not to "poach" each others patients. After a few years of complaints to various officials they allowed me to see a new foreign doc who just graduated from a school in the Bahamas. There is a huge shortage of docs in the state. This doc was resentful of taking me on and didn't treat me well which is I hear common in his country. This year I found a semi-retired rural GI doc who has been supportive but has no experience treating anything like MP. I went to a pain clinic last week and was only allowed to see a nurse practitioner, apparently you only see the doctor for major procedures. They offer opioids on a very strict program which I'm trying to avoid. Otherwise they offered a celiac plexus nerve block which I am considering but there can be substantial side effects and without being able to discuss it with the doctor before the procedure I'm reluctant at this time.