Mesenteric Panniculitis or Sclerosing Mesenteritis

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.

Wow @aland! Your symptoms sound awfully familiar to me....except my pain is on the right....I have been weaning off the Prednisone (I have been on them since August 2017) and the pain has returned to the point that it feels like a complete relapse. My GI hasn't responded to my numerous emails and/or calls to the office for some sort of direction which is very frustrating to be sure. I am also on tamoxifen which is supposed to help. Maybe I would be worse without it? I almost think that medical hands are being thrown up in the air as to what to do to help me. I actually had a life before I was diagnosed with this disease. We all did. Try not to get frustrated, but I think most of us on this forum have been frustrated at some point or another with the lack of help and research. I would be interested in hearing about the pain management clinic and if it helps you. Take care.

Gee! Make an appointment with the guy - or woman. Some doctors dispense advice over the phone and are liberal at saying "call me." But some just dont have the time - there are other patients they need to deal with as well. Or, they are just running a small business and need to make money. Advice is all they can sell. Or change mds if this person is truly throwing up their hands. Good luck to you, It is easy to give advice when we are not in pain and so difficult when we are in the throes of the pain. Wishing you good karma.

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

@kimh I will. Different network doctor and my electronic records don't transfer...UGH

Please get your best opinion at Mayo Clinic, Rochester, MN, Attn Drd Alexander or Pardi, google phone and Fax for details.

@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.

Thank-you for your very warm wishes....actually nice that someone wants to respond to me....

I honestly understand your frustration. To be honest, at least I have pain medication to fall back on. I can't imagine what a pain management clinic could teach you and that's why I am curious to find out!

I have heard great things about Dr. Pardi, but I'm not sure what else he can do for me since there doesn't seem to be any new research out there. If things don't improve, I am considering trying the Mayo Clinic but this is a tough decision as I am coming from Canada and am unsure if any medical expenses would be covered in the States. I know we don't have much life without our health, but I don't want to bankrupt my family for treatment that isn't any different from what I am currently doing.