Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

Good morning. I am glad to hear you are making progress! I hope to say that soon!
Yes, being on pain meds is not going to be an option for very long. It's not how I want to live. I am doing as much research and trying everything to get this under control. With the absence of sjogrens and lymphoma per lab work, I feel I might need to go on a round of steroids to get things back to 'normal'. I'm not sure. Did they try that with you? And I don't want to be on steroids long term either. The only abdominal surgery I have had was my gall bladder out about 20 years ago. Not sure if that has been a contributing factor, and I do tend to carry a lot of stress in my life (work, kids, etc...). I've read stress complicates it all. I have retired (yay!) and I mediate everyday and walk. Just added a bit of exercise with light weights every other day (when I am not in pain).
Thank you for the link to Mayo. I meet with my new GI doctor tomorrow (because I am having issues currently, they pushed up my appointment). I am going to talk with her about Mayo and see what she thinks. I really like her. My first meeting with her, she talked with my for an hour and a half! I thought that was amazing. Now that she has all my records I hope she will have a plan to move forward with controlling this. I get this feeling it might be something I will live with or I also read it can just go away on its own...who knows!!! Please stay in touch. It's nice to talk with someone who is in the same boat and understands. :-). Take care!!

Great news that your GI appointment was moved up, and encouraging to hear you started exercising, @aksandralynn.

Excellent question about steroids, you may be on to something! They help with so much and they are a last resort for me. Methylprednisolone is on my allergy list after a medication challenge confirmed an adverse reaction.

Let’s do stay in touch.

What progress did you make with your new GI doc today?

@peterose ....... Hi most over 60's have it and although it shows up on ct scans ..doctors etc tend to ignore it until patient has intestine issues etc....when the presence of mesenteric panniculitis. adds to the challenges!

Watch what you eat /exercise ect.....try anything to reduce inflammation!

.ONE QUESTION ........ARE YOU CONSTIPATED?

Hi, I was diagnosed with mesenteritis in the left upper quadrant of the abdomen, and I also discovered a concomitant aneurysmal dissection of the superior mesenteric artery and the celiac artery. Does anyone have any experience with this? Are you aware of any interactions? Thanks, Fabio.

Hi, have you ever checked to see if you have a rare disease called alpha-1 antitrypsin deficiency? Among the problems you present is panniculitis. In Italy, we've never seen any in the mesentery, partly because it's a "rare" but underdiagnosed disease.

Fabio

Hi @fabiof - as you mentioned you have a diagnosis of mesenteritis, also called sclerosing mesenteritis, which belongs to a spectrum of rare diseases, I moved your post here to where you could connect with others talking about this condition such as @peterose @bluecars2 @aksandralynn @sdrussett1 and others who may know about this disease and how it may affect the left upper quadrant of the abdomen as you have mentioned, offering their empathy and what may have been helpful for them.

Some of the members in this discussion also may be familiar with the concomitant aneurysmal dissection of the superior mesenteric artery and the celiac artery you described, and I would ask them to share about that, if so.

Are you experiencing bothersome symptoms at this time, fabiof?

Hi Lisa, thank you so much for your kindness and attention. Regarding the symptoms, they are mainly:
- slight, constant weight loss
- localized pain, sometimes with pins and needles
The fear is that it may have caused the arterial dissections and that it may continue to work against them.
I believe in my case that it is linked to alpha-1 antitrypsin deficiency
but it's difficult to get a diagnosis for everything, especially for mesenteritis. I understand that it has always been neglected and left to chance, at least here.
Thank you
Hugs
Fabio

@jlharsh
Good morning. Thought I'd share a quick update. I am on week 2 of 4 weeks of prescribed steroids (Prednisone). Feeling actually good and no real side effects from the steroids. My son (who is a GP) shared that the steroids are like a 'bullet proof vest' so that's why I feel good. My referral was sent to Mayo in Phx and my records are being reviewed by a GI team. I will be contacted once those are reviewed and if they want me to come down for a consult. I am also having visceral massage on my belly area and back twice a week. Continuing with light exercise and eliminating foods that are high in inflammatory response for me.

hi..............how long did it take to be properly diagnosed? what were your initial symptoms?

good luck going forward

@peterose
Hi, I have been in and out of the ER with diverticulosis and diverticulitis (complicated) for close to 2 years now. I saw a GI specialist who scoped one end to the other, ran labs and tests. Everything looked 'good', though I did show as having NAFL (non alcoholic fatty liver). and of course my diverticulosis are always there. He told me to not take NSAIDS (which I don't), and to 'lose a few pounds'. I was set up with a nutritionist to keep tabs on foods that could flare my diver, and also calm inflammation (had a blood test that showed foods I need to stay away from to keep inflammation down). Since then, I still have felt like I have chronic inflammation and in the last 8 months my whole stomach area has not felt right. Sometimes it is just an underlying feeling and sometimes outright pain (can't walk upright). Because it became more of my whole stomach, and not just lower left (diver), I became concerned. I went into the ER in Sept to check for appendicitis or kidney stones (pain started to be felt in my upper/mid back area at it's worst). In the ER they gave me a CT scan (second one in 8 months), and shared I did not have appendix issues or stones, but that my 'Mesenteric Panniculitis' was still there (radiologist compared my two CT scans) and suggested I speak to my GP. She shared it's a rare condition and only has had one patient with it. She then referred me to a new GI doctor (felt totally dismissed by the first GI doc). My new GI doc put me on a round of prednisone and referred me to Mayo in Scottsdale AZ. Hoping after they review my records (this week - fingers crossed), they will set up a consult maybe next month. I have been doing as much research as I can since this seems to be not a well understood condition. So far my labs don't show as having autoimmune (Sjogren's is often association with MP) and I don't show signs of lymphoma (though in my reading it seems as if a biopsy is really the only way to rule out lymphoma issues). I've also read a round of steroids can take care of it or sometimes it can just go away on its own. I am 61 and very proactive with my health, and am trying to focus on exercise, healthy eating and stress. management, but don't want to miss anything.
How long have. you been dealing with MP?