Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

I wrote a previous post. I also had A-typical messenteric panniculitis symptoms in that I had pain from 2009 to 2016. Had exploratory at Mayo Clinic, Rochester, MN. Lymphoma was also expected finding but doctors were surprised to find a rare cancer, Carcinoid, in July 2016. I can not recommend Dr. Alexander enough. And Dr. Kellogg, Specialty Surgeon. I am currently in the waiting room of gastro oncology at Dana Farber, Boston, to oncology Dept recommended by Mayo team to follow me for the indicated ten years post surgery.

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Hi There, It sounds you had the right doctor, I'm a couple of thousand miles away but I do need to ask a question about your Carcinoid. I've been diagnosed with MP since 2016, but and severe attacks from this since 2012. Did the doctor say where they located the carcinoid and your symptoms unless your symptoms were from MP? The reason why I'm asking is that doctors in Boston and in New Hampshire are clueless to what MP is. Most of what I've been reading is, many have had either lymphoma or tumor. So my own PCP doesn't believe in preventive care of MP and what it can lead to.

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@skywave

There is no underlying cause with my MP either, at least I hope not since they are more reluctant to follow any guidelines at my medical facility. Please excuse my non reply's to others if you did send me information regarding MP or wanted discussion. I was being bombarded with all auto immune disorders and it became a bad distraction when your phone and watch would light up a dozen times a day with non MP issues. All I can say is that I have a pretty good footing about what MP is. It is the problem with NE medical facilities that lack the caring for refined diagnosis and treatment. I can say without a doubt from Brighams Womans and Dana Farber that laxatives isn't the prime treatment for relief as this was what my so called specialist best guess solution.

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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.

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@kanaazpereira

Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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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.

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@skywave

Hi There, It sounds you had the right doctor, I'm a couple of thousand miles away but I do need to ask a question about your Carcinoid. I've been diagnosed with MP since 2016, but and severe attacks from this since 2012. Did the doctor say where they located the carcinoid and your symptoms unless your symptoms were from MP? The reason why I'm asking is that doctors in Boston and in New Hampshire are clueless to what MP is. Most of what I've been reading is, many have had either lymphoma or tumor. So my own PCP doesn't believe in preventive care of MP and what it can lead to.

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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.

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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

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@cconnors

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

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Dr. Jason Alexander

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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.

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@cconnors

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

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@musicflowers4u What city is Dr. Alexander in?

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@cconnors

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

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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.

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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?

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@cconnors

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?

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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.

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Sorry to hear of your troubles at Mayo Clinic Rochester, I am a patient there and have not encountered one rude, unfriendly person. I have gotten appointments faster than expected most of the time, but given a reason if I couldn't. I guess things are different for different people. Mayo's motto is "The needs of the patients are above ALL other thinks" per Charles and William Mayo, I believe it to be a living motto.

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@cconnors

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?

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It's been a hard time finding someone who actually knows what MP is, where do u go and what's the outlook. I'm in the same boat. To find compassion and a kind voice helps tremendously. So how do u go from point A to C? It's that (B) that's the killer, hate using that word, but when it fits. We, as your not alone in this fight to get help. We call looking for help, and we end up talking to a bridge troll. They won't lower the bridge for you to cross for that help. The talk to u as if your asking them to pay your IRS taxes. They make it sound as if where the ones with the knowledge already in hand. Then, to round it off it is our duty to address them as queen or king, that their time is governed by what they dictate. Yet, for what ever purpose there titles are receptionists or customer service providers? Go figure, our health is second to their primary needs to be pampered and never questioned, only to be told when to speak and when to be spoken to. To actually find someone with the ability and knowledge to help you is beneath their need to sit, answer, and smile and gossip for a paycheck. Never mind your needs to not suffer from a debilitating, rarely recognized disease and find that pervebal needle in the medical soup. We pay more, we get less for a government controlled Healthcare system designed to promote jobs within the system. As we feed this system, we are actually not in the system. So I can only offer one true comment that has a rarity of working, that good luck is really all we have left. 

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Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

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