Hi Missy, I’ll send you a private message in here for some addl info on a private group with over 340 members with MP or SM.
Lisa

Hello @missisays7, Welcome to this discussion group.
Sorry to hear they dropped the “suggestive of Mesenteric Panniculitis” Bomb on you. There is a lot of information available through this group and other groups as well. There is “Some” good information on the internet.

Are you having severe symptoms? On any Meds at this time? Seen a Gastroenterologist? I don’t mean to pry but those are some of the questions that give some information on where you are in the process of things.

I don’t want to comment on what Suggestive of Panniculitis could mean but I do know it may not be not such a bad thing depending on the other information included in your CT reading. Was your CT with contrast injection?

Hope to hear back from you, best wishes for your health and peace of mind.

Thank you. Im Gulf War Illness veteran and due to the myriad of symptoms that can include…which intestinal condtions such as sjogrens disease and others….things are overlooked….we muddle through the system with this vague list of symptoms and that. In 2013 I had ascites after passing kidney stones….severe…fluid around all my organs..hospitalized….and thus series of tests began. They noted issues in abdomen…life went on…stuff ignored as usual.
Then early this month I contracted rocky spotted mountain fever ( confirmed by lab taken days later just got confirmation today) was in ER for abdominal pain. On the CT they noted progression from the stuff in 2013 and through out the mesentery panniculitis……that was incidental to the other notes on the fluid around appendix( rmsf mimics appendicitis) . So in essence…the tick infection led to the CT the VA did not follow up with and this now I know of the mesentery issues progressing.
Had seen a heart doctor this week who looked at all my tests done from 2013 to now…with the ascites and stuff noted in digestive organs and he immediately suggested oncology, hematology and gi for surgery consult.
SO now….I know what mesentery panniculitis means…wow….GLAD to finally meet people who are familiar with it! I have looked all over the internet. Searched on fb and the only thing came up was two people mentioned it in a post. Did not see any groups on it.

Thank you! Have been looking for something like that!

NO they did not do ct with contrast the reporter of it suggested follow up with contrast…the only follow up was ultrasound that the tech said she didnt understand why they ordered this test..but the heart doctor referred me to oncology, hematology and GI for surgery consult, he is private non va doctor through veteran choice program living 40 miles from nearest VA.

Wow, I’m going to read your post a couple of times to take it all in.

This is a multi national group so assuming you are US Military, I thank you for your service. Keep us posted on how things progress for you. Hopefully all those issues get prioritized and knocked down one at a time. If you have any questions bring them here, hopefully someone can help. May I suggest to read through past posts, there is some good advice on diet and a lot of good general information about the disease.
Best wishes to you!

Missy, got your email. You’re unable to find the group as it’s private due to the nature of the disease and symptoms and medical information. Sent you my FB contact info under Lisa Schwart in Tulsa Oklahoma to send me a friend request … I can add you after that. We have a handful with sjorgens as well and can help network you with others in your state or country. I’ve worked networking each and every person I add in to the group w doc hospital info in their states and also docs at mayo and Cleveland clinic that I’ve referred to several now and being seen at Cleveland all under one doc up there who has 6 SM patients now and just texted him with a 7th referral for another. Had coffee with him and discussed our group that we have and continuity of care w mayo and Cleveland providers and also within each state and we have many overseas all across world networking together with docs and also as friends for support.
Lisa .

THANK YOU! Will contact you on fb. Yes Gulf war illness has been reported with cases of Sjogrens too. I live in Oklahoma also! Just was in Tulsa last week at the mayors veteran committee meeting and welcome home special ceremony to vietnam vets. I looked up on xpertdocs for specialist here in Oklahoma to treat this and hoping she will take my case. It is very hard for me to travel very far with spine disease I also have. SO praying can find one in Oklahoma. There is one in Dallas too. If I have to travel I will…is just hard .

Hello @missisays7,

I’d like to add my welcome, and also convey our immense gratitude for your service. I’m sorry to learn that your condition was not diagnosed earlier; it’s sad but true, that we don’t pay attention to the people we should value, such as yourself, who’ve probably sacrificed much for our country.
We are glad you’ve joined Connect, and, as you will see, there is a great community here, ready to share their experiences and offer whatever support they can, to help you.

I’m sure that @billymac65 @dennisl27 @billindc @susierq111 @bakb @denia @bertbiz, @mardellepoff @miker46 @mommasaid @doron @gmeg and others in this discussion will jump in with their insights, and suggestions as well.

This information from UpToDate may also help answer some questions regarding why and what kind of tests are ordered with this diagnosis: http://bit.ly/2qjCW0G

@missisays7, did you have to make significant changes to your diet? Are you experiencing any symptoms with the MP?

Can anyone respond back to me on sclerosing mesenteritis.

I have just been diagnose with SM I am trying to feel my way through this to choose Florida or Minnesota. I no nothing about either so any help will be greatly appreciated. Reid

Sent you a private message on here

That’s a surprising statement as a doc at mayo has consulted on my daughters case off and on since 2008 and she was 14 when diagnosed and 23 now. We have a private med group of approx 350 members all across the USA and multiple other countries with ages ranging from 18 mos at diagnosis to in the 80s, with many in their 30s and 40s and a handful in their 20s. Many which are or have been treated at mayo.
Lisa

Dear hard close, we have 2 in our group that are positive with igg4 related SM. Feel free to contact me for more info ..
Lisa Schwart
Tulsa Oklahoma

Daniel, sent you a private msg on here
Lisa