Connect
Mesenteric Panniculitis or Sclerosing Mesenteritis
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
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
How is your daughter doing Lisa? Were you able to be home over the holidays? Will the next surgery be for the bowel transplant?
-
Like -
Helpful -
Hug
1 ReactionGreat to learn a little bit more about you @Weedy. You may be able to provide support to other members in the Heart Health group, in particular @twptrustrek, who lives with a-fib too. https://connect.mayoclinic.org/discussion/i-have-had-5-cardioversions-one-stent-one-balioon-angioplasty-and-an-cath/
It's one big community!
Glad you've paired up with @vdouglas here too.
<br />
Hi Gehres<br />
<br />
You're dealing with a lot of tough issues. It's hard but you have to be optimistic about the follow up Ablation. Get that A-fib taken care of you are going to feel much better. I have pvc's as a result of Mitral Valve Prolapse so I can, to some degree, understand. It's very difficult dealing with two or more major issues and just as difficult to remain optimistic. <br />
<br />
I have only been diagnosed with Mesenteric Panniculitis for a year so I am really new at understanding this disease. I have probably had it for about 4years prior to diagnosis. I am also diabetic which complicates things. <br />
<br />
I do not know about the MRI. The hospital wanted me to have one done but my Doctor said it wasn't necessary because the CT would best show what is needed. Have you talked to your doctor about it? That brings up another issue, sometimes Doctors can get a little overwhelmed with multiple issues, makes it hard to cover everything in a 30 min. appointment.<br />
<br />
There are some good dietary recommendations on this site as well as common treatments. I have learned much from reading the older posts.<br />
<br />
Wish you well. Sorry this is so long. Keep us informed how you are doing ok.<br />
<br />
Von
-
Like -
Helpful -
Hug
2 ReactionsI went through the usual gamit of emotions (shock,remorse and anger ) <br />
I went to a few pshyc sessions and some xanax.<br />
I finally figured out that it was my own self that would control my condition influence and not my condition controlling me!!<br />
After 2-1/2 years of a "normal" life BOOM the a-fib reared it's ugly head again and lasted for three days before returning to normal rythm.<br />
I,m not a whiner nor a pill popper and try to overcome emotional anxieties with a busy mode of activities both physical and mental.<br />
It's good to know that I'm not the ONLY a-fib person on the planet and how others handle it.<br />
REK<br />
Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since I last posted. I was diagnosed with M.P nearly 7 yrs ago and have had flare ups every 6 months. Some have been severe and I have had to be hospitalised for pain management but usually if I get on to Prednisolone early enough and take Oxycodone and Tramadol, I can manage it. I have a good doctor who has read up as much as possible on the illness but trusts me to know when I am having an attack which is usually confirmed by CT. It has now been 12 months since my last bout which was very severe and lasted longer than usual. In the early years I noticed that during an attack, eating meat brought about more pain so over the years I have developed an aversion to most meats and usually live on chicken and fish. I am beginning to think that this change in my diet is the result for me not getting an attack in line with the usual six monthly cycle that I have experienced in the past. Have any other sufferers changed their diet in this way and noticed any benefits.
-
Like -
Helpful -
Hug
2 ReactionsHi Angela,<br />
<br />
Welcome back if I can say so. Good to hear you are coping and experiencing some encouraging improvement. Here in the U.S. we have a Steak House called "Outback" they wouldn't like your theory. <br />
<br />
I just started having a flare with abdominal distress, cramping and pain mostly on the left side going down to lower abdomen. I am going right into a soft mostly liquid diet trying to stay out of ER. It's been over a year for me. <br />
<br />
Anyway, just wanted to mention that I had just started adding more protein into my diet before this flare. I am diabetic so I was hoping to replace carbs with meat. I don't know if it is coincidental but I am certainly going to take note after your considering your remarks. My Doctor thinks I pulled something, imagine that. I will say he is a good Doctor.<br />
<br />
Hope it keeps working for you, maybe something for all of us. Keep us posted please.<br />
<br />
Von
Von:
Sorry to hear you are going through another bout. I seem to be the extremely fortunate as I have not had a recurrence in over four years now.
I know this is completely off beat, but along the lines of diet, I have be trying to juice as much as I can. It is a pain to keep the juicer clean and to make the juices, but I have to admit that I feel better when I do. I know it is likely only a placebo affect that I am feeling, but I will take it!!
When I was first sick, a friend referred me to the movie and web site http://www.fatsickandnearlydead.com. It is about an Australian with an auto-immune who juices and travels his way across America. Not sure the science is sound, but again, when you are feeling that crappy, you will try just about anything, and so I did.
My favorite juice is as follows: Kale, spinach, and Swiss chard with an apple, half a lemon, and some strawberries all over ice. It is green and gross looking, but tastes not half bad. I just visualize all those good ingredients running like an army to help my immune system!!
Lastly, I took the 23andMe.com test. It is very cool. They now have over a million people in their data base and are trying to help pharma companies find enough people with wierd stuff like we do to sift through our DNA to find cures. I think all of us with this auto-immune should take the test, then tell them we have, who we are, and try to get a scientist to start looking at our DNA for a genetic marker. Just a thought.
Bill
Hi Bill,<br />
<br />
I've also been green juicing and it makes a big difference. I prefer a mix<br />
of celery, spinach, cucumber, kale and carrot.<br />
<br />
Drew<br />
Hi there,<br />
<br />
I was diagnosed and became symptomatic 3.5 years ago, and I could barely<br />
walk, had no appetite, couldn't sleep, but refused to take any drugs. I am<br />
aware that this disease is caused by various factors, but I had a suspicion<br />
that my outbreak was autoimmune related. I researched various diets, and<br />
did the Paleo autoimmune protocol. Initially for 6 weeks I was very<br />
strict, and then I added different foods into my diet. I lost about 20<br />
pounds in 6 weeks, and I wasn't too heavy to begin with. Now I go on the<br />
diet, but cheat regularly. When I cheat too much or too long my body let's<br />
me know as I start to feel cramps in my messentary. The diet has worked<br />
amazing well for me. I had high triglycerites, slightly high glucose,<br />
elevated liver enzymes, and low good cholesterol. Now all my blood work is<br />
perfect with no meds.<br />
<br />
My wife did the diet as well, because she had arthritis in her finger and<br />
couldn't even hold a pen. Now her finger is fine. I wish you all the best.<br />
<br />
take care,<br />
<br />
-- <br />
Doron<br />
Bill<br />
<br />
Appreciate the support. I will keep the juicer in mind. Right now not eating much, just water and cottage cheese, soft breakfast bar. Not much appetite or energy but the pain does seem to be better. Trying to tough it out and not increase from the one 50mg Tramadol in the evening. No fever a big plus. Had blood test today for "everything" to see ?<br />
<br />
I will check out that site you mentioned. Glad to hear you are doing so well. We have to be thankful for all the good days and just get past the bad.<br />
<br />
Von
-
Like -
Helpful -
Hug
1 Reaction