Mesenteric Panniculitis or Sclerosing Mesenteritis

prefect, when i signed up, it really I really couldn't find the how to in this group. And, yes getting hit with hundreds of posts on the entire auto immune disorders became a instant headache to say the least. Adjustment of the settings cured it before the computer was shot for treason. Thank you.

sorry to hear your relapse, I've had at least three since my first incident with MP, which I thought I had gall stones or the pancreas was acting up. I've had zero meds though due to my allergy to steroids and NSAIDS. My best wishes and stay tuned as I'm hoping to here more from others who suffer from MP.

I lived with MP for many years (first suspected in 2009 and subsequently diagnosed a couple years after that) and doctors (gastro and surgeons) said no big deal, not serious. Drove myself to ER in 2016 when pain so intense and CT scan which I read for myself indicated large swollen lymph node in mesentery and should be biopsied. I sought out surgeons in my area who all said impossible to get to that spot in mesentery to biopsy and remove. Last surgeon of a major hospital in my area who professed to be knowledgeable of MP told me that if there was one lymph node enlarged in one part of the body surely there would be one in another part. So he did endoscopy and biopsied one lymph node which proved negative, He prescribed prednisone and tomoxifen. I had already decided to go to Mayo Clinic in Rochester, MN and he was aware of that stating two minds are better than one. I did not take the meds. Dr Alexander, Gastro, Mayo Clinic, said of three options I could opt for exploratory which I did and he called in Surgeon for consult that afternoon. Most frequently said Alexander, they find the MP is a symptom of an underlying condition and they usually find Lymphoma but are sometimes surprised, Surgery with Dr Kellogg and team the following morning (July 15, 2016) at St Mary’s Hospital. They were surprised. I had Stage III Carcinoid Cancer. Three feet of small bowel removed, twelve tumors and 13 lymph nodes of which six tested positive for Carcinoid Cancer. (Doctors at Mayo know to harvest multiple lymph nodes for proper diagnosis as they see these situations on a far greater scale than any local doctors). Long story short, the pain of MP got so bad it was like something in me exploded and took my breath away. Doctors said my pain was A-Typical and happens like mine when things have progressed too far. I don’t tell you this to scare you, but after so many missed signals by my specialists in my home town and surrounding area (metropolitan area no less), I am happy to shed light on this in hopes someone else can perhaps find another cause of their discomfort if indeed there is another cause. Hope this is the answer you were looking for. Good luck.

I've read that Dr. Pardi is who is recommended for mesenteric panniculitis, when I called the GI department I was told that this is not his specialty, that he just wrote a paper on it. Has anyone else been told this? Who is the preferred doctor to see?
Thanks for any information.
Cindy

Dr. Jason Alexander

I'm in New England, we have no specialist. I don't know anyone that is, sorry. As it sounds, I'm out of luck where I live.

@musicflowers4u What city is Dr. Alexander in?

Mayo Clinic, Rochester, MN - best to send a letter to him at the Gastro Dept and tell him your medical history re Messenteric Panniculitis, symptoms, meds, what tests you have had done, bring test results/CDs with you to his office, do not send ahead of your visit. Tell him what you are looking for (second opinion, etc). Keep your letter short and to the point, no more than one page.

I called to make an appointment today at the Mayo in Minnesota, I called a few weeks ago, and was told to try back today because I wanted an appointment in late June. When I called previously the person that answered the phone was very abrupt and told me that Dr. Pardi does not see patients for this... he just wrote a paper on it. When I asked who specializes in this, they said I would have to see one of the general GI docs. When I called this afternoon they had the same attitude, like I was disrupting their day. Not friendly at all. I was told that there is only a Glen Alexander, no Jason Alexander and that he doesn't see patients for MP. I again asked about Dr. Pardi and was told that he rarely sees patients but might be available for the dates that I was looking for. They want me to call next week when the appointment calendar becomes available. Has anyone else experienced this issue when trying to make an appointment? Should they advise if there is a doctor who specializes in this? Are the doctors as cold as the person answering the phone?

Yes, Glen Alexander. I urge you to write a letter, find out their FAX to fast track it. Address it to Dr. Glen Alexander, Gastroenterology, with a request for an appointment for consult. Give a short summary (one page) of what you have been through with diagnosis of MP. They are very busy but will send you back a letter. Be sure to include your phone numbers and e-mail as well as home address. Once at Mayo Clinic in Rochester, MN you will find everyone friendly and bending over backward to help you.