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Posts (20)

Jul 19, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Same scenario here. Hard to get pain meds when so few people understand the disease. Darrell Pardi at Mayo is supposed to be the best. Met him once and what a nice guy! You're not alone and symptomatic treatment can really help….. It gets better. I did see a study one time that mentioned a link between Autoimmune disease and previous abdominal surgery but with so few people to study it's hard to make conclusions. I've had my gallbladder removed and have ankylosing spondylitis. Hang in there!

Jul 19, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I have no underlying cause as well, but do have ankylosing spondylitis. And a few days before my MP flares up I get pain in the joints of my hands.. very odd. Triggers seem to be lack of rest or too much stress. Diet doesn't seem to play much of a role for me. I have tried Bentyl and hyoscyamine as well as prednisone. Starting on Humira shortly for my arthritis and it will be interesting to see if it prevents flare-ups with my MP. I still get a CT scan every 6 months for lymphoma but so far I've been lucky and nothing in that regard has appeared.

Jul 9, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Was going to make a general post, but for some reason do not know how to do that (any help along those lines would be greatly appreciated), so putting some info here in the form of a reply. Planning a trip up to Mayo soon, due to such a lack of expertise in DC about this rare disease. With respect to lumps, I have found a small lump under my forearm skin before, and of course, start jumping to worst case lymphoma scenarios, etc. (Has anyone seen the research that seems to indicate that about 28% of MP patients have another, sometimes hidden, malignancies?) I plan on getting it checked out next week. Has anyone had elevated CRP (C-reactive protein) levels with negative ANA and normal sed rates with their MP? My platelets also went low but came back up. I recently experienced that, along with a measles-looking rash and low grade fever. I have not seen anyone mention those symptoms on here before, and wondering if they might be related to MP. Lately, Omega- 3 fish oil and flaxseed powder: one tablespoon in a protein drink daily, have seemed to calm down MP GI symptoms for me, along with probiotics. It keeps me off the pain meds, which recent legislation has made more difficult to obtain for legitimate patients. The harder part for me is keeping a good attitude in light of the fact that there is no real incentive for any drug company to develop a treatment, even if enough patients could be gathered for any type of clinical trial. Just too rare. Dealing with a poorly understood illness that waxes and wanes is, I think, the worse part. My heart goes out to all the sufferers on this site, and I’m so glad we at least have kindred souls with whom to share information and bolster spirits. I try my best to remain in the present and take one day at a time. ~Bill

May 23, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

We are all in the same boat, and there is definitely some solace to be found in knowing you are not alone! I hope the diagnosis helped explain a lot of the “mystery” symptoms that must have puzzled both you and your doctor(s)! Having dealt with MP for 17 long years, do you have any recommendations as to what diets or treatments have worked for you? Nice to have everyone’s support on here…it really prevents despair from rearing its ugly head!

Apr 11, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

John, I wish you all the best. Your symptoms sound so similar to mine. Diagnosed with MP a year ago via CT, now diagnosed with central sleep apnea and neuropathy (mainly toes). Thyroid, B12, glucose blood levels all okay. MRIs and EMG showed no radiculopathy . Just plain weird. Zofram gets me through the nausea and sometimes a Tylenol 3 for abdominal pain. Abdominal symptoms come and go. I suppose there are worse things in the world; but, the bad days are becoming more frequent. I am glad your lipomas were benign….that’s good news! ~Bill

Mar 4, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi, I am just seeing an email you sent me back in June! I hope I had responded, but if not, I wanted to see how your husband is doing. I have not been on the forum for about 8 months, and just started back since I am going through a flare-up and have decided to really get some answers, possibly up at Mayo. How are things? ~Bll (Silver Spring)

Nov 10, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I like the docs at Capital Digestive in DC; but no real experts in DC or up at Johns Hopkins. The real authority in the US is Dr. Darrell S. Pardi, MD up at the Mayo Clinic in Rochester, MN; but, that’s a journey. Good luck!