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billymac65

Mesenteric Panniculitis or Schlerosing Mesentertis (Auto-immune around small intestine)

Posted by @billymac65 in Digestive Health, 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

Tags: mesenteric panniculitis, auto-immune disorder, Schlerosing Mesenteritis, Retractile Mesenteritis, lymphoma, Diverticulitis

viva, Mardelle Poff, BILLinDC and 7 others like this
camih00

Posted by @camih00, Dec 7, 2012

Hi Bill. While you wait for some conversation to build here, I thought I'd share a Mayo Clinic patient story that might be of interest to you: http://www.mayoclinic.org/patientstories/story-441.html

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billymac65

Posted by @billymac65, Dec 7, 2012

Thanks Camila. Very interesting. The story said her mass was the size of a quarter. The doctors told me mine was 8cm wide and long. Prednisone was what I used and now the mass is all gone. They take a new MR every 6 months or so to monitor. So for now, just keeping my fingers crossed!

peggyanned

Posted by @peggyanned, Feb 6, 2015

How long did you have to be on steroids?

billymac65

Posted by @billymac65, Feb 6, 2015

I was on steroids for almost 18 months. 1 month at 40mg. Then I tapered back down to 20mg over 2 months. Stayed at 20mg for another 2 months. Then tapered to 0 over 9 months. As I tapered, the pain came back, and I thought I was relapsing. Turns out it was just secondary pain from the trauma, not the autoimmune. I used very small dosed of Lorazepam about once every 2 weeks to help with the pain and to calm me down. Basically, it was like taking a nice glass of wine. And it seemed to work every time! It took another 18 months for me to recover from the pred, and get my energy levels back to normal.

It was a long slog but I am doing well now and savoring every day!!

TJ likes this
lisas444

Posted by @lisas444, Nov 19, 2015

Great story on Carol. We have a private group as well with 177 members in it all with SM / MP internationally so all your medical, symptoms, meds, etc. aren't public, etc. and also pairing people up with other's in their states and/or countries for help with finding docs/facilities to treat SM or MP. Mayo and Dr. Eli at Northshore see the most with SM/MP. 🙂 My name is Lisa Schwart in Tulsa OK on FB if you want to contact me for any more info and adding you over to it! 🙂 Thx! This is a great page as well! 🙂 Lisa

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dotb

Posted by @dotb, Dec 7, 2012

Hi,
I am trying to find out more about mesenteric panniculitis. It was found incidentally on a CT scan where the doctor was looking for a ventral hermia. The doctor never brought it up during the appointment and then I requested a copy of my CT scan and read it. Any information would be helpful? What type of doctor should I follow up with. Thanks, Dot

billymac65

Posted by @billymac65, Dec 8, 2012

My doctor is a gastroenterologist. They seem to be the ones who specialize in this. I would start there.

danrofohio

Posted by @danrofohio, Dec 18, 2012

Dot,

Thank you for starting this. Right now, I am very discouraged because of my experience with mesenteric panniculitis. I was diagnosed in March of 2011 when excruciating abdominal pain caused me to vomit repeatedly, and I went to the emergency room at my local hospital. I had been having pain from the panniculitis for months or years, but I just ignored it until it became unbearable. A the ER called in a surgeon, because they were afraid of an aortic aneurysm. He order a CT scan and whoever read that made the diagnosis which the surgeon confirmed with endoscopic surgery.

The surgeon treated me for the next three months by starting me on a course of prednisone (40mg for a month, then 30, etc.). After the first month, my symptoms were bearable, and a follow up CT scan showed the mass to be smaller. However, subsequent scans showed no improvement, and my symptoms did not improve either. So the surgeon said that I needed to go on to a research hospital, and I chose on four hours away because their rheumatology and GI departments were rated as one of the best in the country.

On my first visit to the research hospital, I saw a gastroentoligist and a rheumatologist separately. The GI wanted me to see an oncologist which I did, and the rheumatologist presecribed azathioprine (Immuran) while continuing the predinsone. The oncologist didn't find anything, and after making some adjustments with a very slow taper off the prednisone, my symptoms when away. I was virtually symptom free for eight months and had hopes of being cured and being able to go off the azathioprine.

Then about six or so weeks ago, the the symptoms came back. At first they were mild and rare. Now they occur multiple times per day and are very painful. Meanwhile, I needed to prepare for my next follow up with the rheumatologist at the research hospital in January. I was supposed to call the oncologist and ask him if I should get another CT scan. I did that about four weeks ago and left a message with his admin assistant. The office never returned the call, so I called back about two weeks later, and the assistant said she was going to call me that day, because the oncologist wanted her to ask me if I had CT scan recently. When I told her no, she said she'd pass that information along to the doctor and get back to me in a day. That was almost two weeks ago.

I could call the rheumatologist, but I don't think he really understands why the panniculits is a problem. Based on our previous discussions, I seriously doubt that he has any idea what else to do to treat this. (He had one previous patient with mesenteric panniculitis, whom he treated with azathioprine.)

I would appreciate any suggestions that anyone has.

billymac65

Posted by @billymac65, Dec 18, 2012

Have you tried to reach out to someone at the Mayo clinic? I went to the clinic in Rochester MN. These cases are rare (and as I know first hand, pretty scary). The team there seems very experienced and well versed with this. My doctor there was Dr. Glenn Alexander, but their is a great team, and I am sure any would be able to help you.

I am about 8 months or so behind you. I am finally off the pred. I have never taken Immuran. I feel as if I am waiting for the bomb to go off again at any time.

Hang in there but do whatever it takes to get the best help you can.

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bhamilton

Posted by @bhamilton, Jan 19, 2013

Hello, have you had any more information on this disease or any updates on treatments ??

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danrofohio

Posted by @danrofohio, Jan 19, 2013

I have a semi-annual appointment scheduled at the research hospital next week. It will be very interesting to see if the doc has any ideas on how to treat the recurring symptoms.

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bhamilton

Posted by @bhamilton, Jan 19, 2013

Please keep in touch and let us know how it went and what you found out. Good luck 🙂

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billymac65

Posted by @billymac65, Feb 6, 2015

I just posted an update below. Mercifully, I have been off the pred for 2 plus years now and the bomb has not gone off again. I sure hope I am not jinxing myself!!

k2aunt

Posted by @k2aunt, May 14, 2013

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn't having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband's endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn't show anything to the naked eye since he couldn't do a biopsy since I am currently on coumadin and didn't come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn't last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don't mind dealing with pain but if i get a "flare-up" it hurts to the point i can't do anything. Thanks for listening and any suggestions you might be able to provide.

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billymac65

Posted by @billymac65, Feb 6, 2015

K2aunt - How are you doing now? Are you in remission? Or are you still dealing with flare ups?

mardellepoff

Posted by @mardellepoff, Jun 1, 2016

Hello. My husband was just diagnosed with MP this past weekend. We have gone for years with the pain, nausea, vomiting, etc. When it gets real bad, we go to the ER where they rule out heart, drug him up for the pain, then send him home, often still vomiting, with instructions to follow up with GI. Fortunately we had a new young doc this past weekend in the ER who suggested MP, which was confirmed with the CT. He has had CT scans in the past which have "not shown anything definitive", but now I wonder if they were just not looking in the right place. We are in Frederick County, Md, and were wondering if there was anyone in Baltimore or DC studying/familiar with MP. Have you had any luck? Thanks for your help.

billindc

Posted by @billindc, Jun 1, 2016

I am so sorry to hear of your husband’s suffering. I am in Silver Spring, so not too far from you. Outside of a fellow in Chicago, Dr. Pardi that I mentioned in my post is our best bet. Nothing available at Johns Hopkins, which is where I looked first. I’ve gone through the same ER trips, 3 times in 10 months until they decided it was not diverticulitis or appendicitis. I understand what you have been through. Even experienced and noteworthy GI practitioners in our area have only seen 1 or 2 MP cases in their careers. Please stay in touch. ~Bill

amyd

Posted by @amyd, Nov 29, 2016

My husband was recently diagnosed with the mesenteric panniculitis. We have had many hospital trips. Many medications, even antibiotics because they said they do not know how to treat it since they do not know the cause. Our doctors say they have only saw 2-3 cases of this. One doctor said he sent a person to see Dr. Pardi but they did not get any relief from him. We were told maybe they would go in and trim some of the fat tissue and see if this would help. This has been going on for a little over a yr now and just keeps lingering. From what I am reading no one is finding any real answers.

bertbiz

Posted by @bertbiz, Nov 29, 2016

Prednisone and the FODMAP diet helped me a lot.

vdouglas

Posted by @vdouglas, Nov 29, 2016

Hi @amydSorry to hear about your Husband's (and yours) struggle with this. Did he have the surgery? if you don't mind saying. Is his worst symptom pain?I don't mean to pry but I am trying to understand this disease a little better myself. When I had the pain it was under my ribs in the back on the right side. It would go around to the front right side to the waist at times. I was unable to get off the couch for about a week when it first hit, then it tapered to bouts of pain and now all but gone. This started in November of 2014 and I have just recently become asymptomatic, no more pain under the ribs. I have taken Tramadol 50 mg and no other medication. I still need to watch what I eat and try to stay regular or there will be discomfort, but it will not make me sick like it did early on.I sincerely hope you and your husband find the answers you are looking for and his symptoms improve as well. I certainly wouldn't want to give false hope but there is always hope.@vdouglas 

vdouglas

Posted by @vdouglas, Nov 29, 2016

Hello @bertbizDid you have issues with the prednisone?@vdouglas

amyd

Posted by @amyd, Nov 30, 2016

He has not had the surgery yet. We are still trying several medications which most are not working. He has severe pain on both sides of his stomach which hurts if you even apply pressure. His back hurts alot as well. He has nausea at times, spasms and will dbl over in pain. The doctir told him to eat whatever because they dont know the cause but he does have diverticulitis so we are careful with that. Thank you for your reply. This disease is very frustrating.

amyd

Posted by @amyd, Nov 30, 2016

He has been on prednisone several times then goes back to same everytime. Have not heard of the Fodmap diet. Doctor said he could eat whatever because they didnt think it was food related. We are very frustrated.

bertbiz

Posted by @bertbiz, Nov 30, 2016

H @vdouglas, I had some muscle spasms in my legs and feet while taking the prednisone. I drank Gatorade and used magnesium oil on my legs and both of those things helped. I got off the prednisone and my hair started to come out. The doctors said the hair would grow back in a few months. I'm glad that it didn't some out in areas so I had bald spots. But it is a bit disconcerting to be washing your hair and have bunches wrap around your wrists and hands... But it seems to be subsiding a bit. I've started washing my hair with CliniCure and using the conditioner and treatment.

bertbiz

Posted by @bertbiz, Nov 30, 2016

http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ This was very helpful to me. However, I'm not giving up garlic. When you irritate the intestines by eating foods that are too high in fiber, or various other problems, the intestine is going to get irritated and inflamed. when I was in the worst pain, I had a lot of chicken broth, baked potatoes, white pasta, white bread, white rice. In fact, the GI doctor said those things would help to calm the inflammation and irritation. It did. I lost some weight because I wasn't eating how I used to. But I did try to add herbs so there would be some kind of "green" until I could start adding in vegetables again. I'd say it would be worth a shot. You have to be really careful what you eat and how much. Small meals or snacks are much better than the three big main meals most people are used to eating. I hope this is helpful.

@bertbiz

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viva

Posted by @viva, Nov 30, 2016

Very helpful indeed, thank you!!

vdouglas

Posted by @vdouglas, Nov 30, 2016

I suppose losing one's hair is not such a terrible sacrifice if the pain and inflammation goes away. I have heard that if you are diabetic it can really upset your blood sugar levels. Even if you aren't diabetic, I have heard that it can. I have not heard about the hair loss. I hope everything works out well for you.Best  wishes and good health to you.@vdouglas

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vdouglas

Posted by @vdouglas, Nov 30, 2016

@amyd,That is very frustrating. I really hope he can improve without the surgery. I'm sure everything seems kind of hopeless but there is always a chance things can turn around. I have read where that happens. Have hope and my best wishes are for your husbands recovery.@vdouglas

shareie

Posted by @shareie, Oct 1, 2013

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

vmc123

Posted by @vmc123, Apr 23, 2014

Hello, I'm mark from NC. I was diagnosed with S/m in 2010. Biopsy confirmed, mass the size of a fist that goes from the front to my back which explains the pains in the front, sides and back! Have been on all treatments that most every one has with no relief. I had to quit my job of 35 years because I couldn't function anymore. I'm currently on fentynal patches and hydrocodone. It helps soom. It inoperable and seems to be getting worse. It's very depressing as I have no job or life and the outlook is pretty dim. I'm giving up hope!:-(

lisas444

Posted by @lisas444, Jul 31, 2014

Hi there, saw your posts on here about SM and MP. We have a support group with 57 members if you're interested. It's a private group to be able to share, support, receive support, doc info, meds, etc. I'm a mom with a pediatric kid with SM. If you write back I can give you the contact info if you'd like. No, it's not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours!

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sue62

Posted by @sue62, Mar 29, 2015

I am Sue from KnoxvilleTN. I was just diagnosed 3 days ago To see GI mid. April. I have read what I can find about mesentery panniculitis.would love a support group if you can give me contact info

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grneyedgemini

Posted by @grneyedgemini, Apr 12, 2015

Would love to join your group

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mommasaid

Posted by @mommasaid, Apr 13, 2015

Would love to be in the group but I don't do facebook or other social
media's. Thanks.

vdouglas

Posted by @vdouglas, Apr 13, 2015

Hi This is Von in Las Vegas. I would love to join your support group. Not sure about the navigation, but I will give it a try.
Von

lisas444

Posted by @lisas444, Apr 14, 2015

I private messaged you 🙂

bertbiz

Posted by @bertbiz, Nov 30, 2016

@shareie, Have you seen a GI doctor? I was on Prednisone for 2 months and then tapered off. I used the FODMAP diet and the swelling and pain subsided. MP is rare, but manageable. You have to find the right doctor and treatment program. Your primary physician can refer you to a GI doctor. Most everything is covered by insurance.

amyd

Posted by @amyd, Nov 30, 2016

We have a gi doctor. Had scope/colonoscopy to see if they were missing anything. My husband is on bentyl, nortriptoline and something else. Just increased the meds because they aren't working. He was on a strick diet for almost a month and that didnt help either. His stomach swells up alot. Has good days and bad days.

bertbiz

Posted by @bertbiz, Nov 30, 2016

I wish I could be of more help.

vmc123

Posted by @vmc123, Apr 23, 2014

Bill, good luck with this disease. I 56, diagnosed in 2010 with s/m. Have tried all the drugs that most every one gets treated with but known worked for me! I'm on pain management using fentanayl patches and taking hi dosages of hydrocodone for pain. I had to quite my longtime job in 2012 because I couldn't function. My life has completely changed because most of my days I'm either in bed or recliner with a heating pad!! I'm so depressed that I don't know what I'm going to do! I have filed for SSD but got turned down the first 2 times, now waiting on a hearing date. I do hope you do okay!! Good luck

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tardis6167

Posted by @tardis6167, Jun 5, 2014

Hi Bill. I live in Australia and was diagnosed 5 yrs ago. I have severe attacks every 6 months. Treated with 40g Prednisolone reducing by 5g every 5 days. Also high doses of Oxycodone for pain. I am learning to live with this but there is not much info out there about future problems if any. No ongoing diseases but history of stomach surgery which seems to have some relevance from what I have researched. Hope this helps.

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jimmymac

Posted by @jimmymac, Jun 5, 2014

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

tardis6167

Posted by @tardis6167, Jun 5, 2014

You need to see a gastroenterologist and early medication with high dose of Prednisolone 40g. I take 40g or until pain goes then reduce dose by 5g every 5 days. If pain comes back need to go back and start again. I am in West Australia Perth and my specialist is Dr Sharon Masel at Mt Lawley St Annes Hospital. Hope this info helps.

Sent from Samsung Mobile

billymac65

Posted by @billymac65, Feb 6, 2015

I took a similar course of pred, but when I tapered to 20mg, they had me stay at that level for 3 months, before then working to come off all together, which took another 9 months.

angel11

Posted by @angel11, Jun 27, 2014

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Posted by @Margaret_Marie, Jun 30, 2014

Hi @angel11. I'm sorry to hear about your recent diagnosis. Here is some information on sclerosing mesenteries, also known as mesenteric panniculitis, that might be helpful for you: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/basics/definition/con-20037148

angel11

Posted by @angel11, Jul 7, 2014

thank you very much! the gastroenterologists are doing a full workup, I have been dianosed with this disease and it is so iso rare, they have never even treated anyone with it, they are trying to rule out everyting else. So far, everything from Autoimmune, bacterial, and carcinoids, ect have been ruled out. I am having an MRI this week of my small intestine. My big concern is their lack of knowledge and trying to blame my symptoms on something other just because this is a rare disease. The catscan clearly showed and diagnosed this disease. However, guess I will know more after the mri. I continue to have bouts of diareah, pain in my left groin and abdominal area, nausea, fatique, flushed, bloating. I have been on the steroids for about 2 weeks now. I think they are helping a little. My gastro said since there was no big improvement in a week, that it prob wasnt this disease. Studies show that it could take months for the inflammation to decrease, not a week. I guess my next question is, where do I go for treatment? I live in Pennsylvania, if I have to travel I will.

lisas444

Posted by @lisas444, Jul 30, 2014

I have a child with SM. Very aggressive case unfortunately. Live in Oklahoma.

angel11

Posted by @angel11, Aug 20, 2014

Im very sorry to hear that. I pray your child gets better.

lisas444

Posted by @lisas444, Jul 31, 2014

Hi there, I saw your posts on here about SM and MP. We have a support group with 57 members if you're interested. It's a private group to be able to share, support, receive support, doc info, meds, etc. I'm a mom with a pediatric kid with SM. Please write back I can give you the contact info if you'd like. No, it's not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours and unbelievable communication and support throughout ALL the members!!

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jimmymac

Posted by @jimmymac, Jul 1, 2014

I don't know much about this disease, I tried to do my research but their isn't much written about it. At least they gave it a name and I have a direction to go on. I cant tell you how frustrating it was to go to doctors and have them tell me they could find nothing. My first symptoms appeared when I was 21 years old and I dealt with it almost on a daily basis. I drank enough Mylanta to fill a tractor trailer truck, it was the only temporarily relief I could find. now Im 58 and my life has had many limitations. Physical stress on my abdomen causes different levels of pain, nausea and periods of confusion. Im 6 ft tall weigh 200 pounds and work construction, I have to struggle to get through a typical day. Im learning to forecast flare ups before they start. I wish there was a magic pill I could take to feel better. I stopped talking about it years ago because no one ever believed me, I just went on with my life. When I was hospitalized 4 years ago they
finally diagnosed me, It peaked my interested to find out all I could about my infliction, best luck to you

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angel11

Posted by @angel11, Jul 7, 2014

Thank you. I did reply above. Its very difficult, I am also
trying to figure out if there is anyone out there who knows how to treat this!!!!! Do you take steriods? This is really the only place right now I feel I can go where someone can relate to this. I hope you are feeling better. I will be sharing any information I can find out about this. Thank you for your support!!!

lisas444

Posted by @lisas444, Jul 30, 2014

I have a daughter with SM and we are in Oklahoma. She was diagnosed in 2008 at age 14. We do have an amazing support group that is private and there are 57 in there as of last week. All variations of SM and MP if you're interested. I can send you the info to link you in if you want! 🙂 She's had 17 abdominal surgeries, multiple bowel obstructions over and over, she is TPN dependent as well as a few of the others on our group. Some have occasional flare ups, some have little issues, some are severe. We're all there though! 🙂

L

peggyanned

Posted by @peggyanned, Feb 6, 2015

How do I join the support group?

lisas444

Posted by @lisas444, Feb 6, 2015

peggy, please Private message me. we have over 80 people now 🙂 look foeward to heaing from you 

billymac65

Posted by @billymac65, Feb 6, 2015

Erin - How goes your progress on this? Did you take steriods? Are you in remission?

lisas444

Posted by @lisas444, Jul 30, 2014

We have a girl in our group in Pennsylvania . she's been inpatient the last few months since diagnosis . ...I'd love to get you in touch with her if you like.

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angel11

Posted by @angel11, Aug 20, 2014

That would be so great!! I really appreciate it! Please let me know and thank you!!!

viva

Posted by @viva, Nov 12, 2016

I was recently diagnosed with MP. I was told that I have probably had this condition forbyears. I do not have much pain but I am certainly fatigued and nauseous. I have my first appointment with a gastroenterologist next week.

kanaazpereira

Posted by @kanaazpereira, Nov 12, 2016

Hello @viva,

Welcome to Connect. I'm very sorry to hear about your diagnosis; however, here you will find so many other members who share your pain and can offer support.

I would like to bring in @bertbiz, @mardellepoff, @miker46, @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, and @adeleccj57, in the hope that they will share their experiences with you.

Viva, we would love to get to know you better; what are you doing to manage the fatigue and nausea? Has your doctor put you on any medications that may be causing these symptoms?

viva

Posted by @viva, Nov 12, 2016

I am just testing to see if I can post. I tried and had no luck a second ago.

vdouglas

Posted by @vdouglas, Nov 12, 2016

Hello @vivaHello and welcome, sorry you have to deal with this condition. I also have MP.I am curious, were you recently diagnosed with MP because you had a CT scan and it showed up on the scan? Was this an ER visit? No pain is certainly a good thing.Wishing you well@vdouglas

lisas444

Posted by @lisas444, Aug 27, 2014

Hi JimmyMac -

We have 58 people in there now as Erin from this Mayo site joined up with us last week and I added her to it. We are on Facebook and a SM/MP medical group. It's a closed/secret group so we can all talk and discuss freely about meds, pain, bowel issues, support, venting, laughter, etc. One of my daughter's docs is in our group as well. My kiddo is currently back in patient on Saturday and still in unfortunately. My name is Lisa Schwart and I am on Facebook, in Tulsa, Oklahoma. If you give me your full name as well and City I can find you and add you as a friend. You aren't able to "search" the SM group as we have it locked down specifically for everyone's privacy. I've been putting together a database for each person with their doc names in each state etc as a resource for everyone as well! 🙂

Lisa

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amilhim

Posted by @amilhim, Oct 15, 2014

is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this disease after so many years of episodic abdominal pain and apparently wrong diagnosis. she is in her late seventies, is it normal at this age?

billymac65

Posted by @billymac65, Feb 6, 2015

When I went to Mayo, they told me I was the only one under 50 they had seen, and that while this is very rare, it is most common in 70+ individuals. But this is just hearsay on my part.

hardclose

Posted by @hardclose, Dec 20, 2014

I'm new to the board, so here is my story...I've been struggling with acid reflux since Aug 2011 and my doctor was running out of treatment options so he ordered a CT. The CT showed Sclerosing Mesenteritis and also found out that I had slow gastric emptying aka Gastroparesis. Just heard yesterday that I have igG4 labs that are elevated to 163. I have suspected that I may have acquired H Pylori in 2011 but I have been tested 3 times and they were all negative. I'm also having MRI about every six months to monitor the condition and check for lymphoma, etc, so far so good. Anyone have elevated igG4 levels or share similar combination of diagnosis?

billymac65

Posted by @billymac65, Feb 6, 2015

I do not recall anyone mentioning igG4 levels to me, but it has been 3 and half years.

peggyanned

Posted by @peggyanned, Feb 6, 2015

I am very interested in joining your group. I just had a CT scan that showed this disease. After three months of awful pain and nausea...losing 25 pounds and having many tests...I might finally gave a diagnosis.

billymac65

Posted by @billymac65, Feb 6, 2015

Hard to believe it has already been three years since I posted this first comment in an effort to connect others out there with this terrible disease to help each other.

I have found this group tough to follow at times, as I worked through my own issues. Hardest part for me was getting off prednisone. I ended up taking it for ~18 months. It took another 18 months for me to begin to feel like my old self again.

But I think my story so far has been very fortunate. No relapse yet and hope that takes a long time to happen. I have been hesitant to add this, even though it is positive, because I know others are still struggling with getting this into remission and keeping it there. My experience was so acute that one doctor speculated that it could go away just as fast as it came because it was so acute.

So all I can do is thank God for giving me the strength to march on and I pray for the rest of you to likewise find the strength you need to persevere and all get healthy again.

Thanks to LS4 for leading the charge on creating a support group. I trust that those that participate find it meaningful and helpful!!

My wife recently began working at 23andme.com. They are working with pharma companies to help find cures for corner case diseases. The big issue for them has always been getting a patient population for study and test. 23andme helps them do that, dramatically reducing the costs of research. Let's hope this innovative approach to genetic testing finds its way to our group one of these days!!

Best to all of you,

Bill

lisas444

Posted by @lisas444, Feb 6, 2015

hi billy. i think everyone here is in our group 🙂  wed love to have you if you like. I laugh that mayo would tell you that as my kiddo was 14 at diagnosis in 2008 and they know all about her, plus the other couple of kids. Our group even has a 17 month old diagnosed on up to 70 year olds and many in 30-40's ...  Feel free to Private message me.

peggyanned

Posted by @peggyanned, Feb 7, 2015

I am interested in joining the group. I have been sick for 3 months with pain and nausea. Mesenteric panniculitis showed up on. cT scan I just had....I have not had a follow up with a GI doctor yet...not sure where to go.

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