Mesenteric Panniculitis or Sclerosing Mesenteritis

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

Hello @warlick and welcome. It's unfortunate that you have been diagnosed with MP but you have already made a good choice to go to the Mayo. I have been to the Rochester Mn. Clinic for consultation with Dr. Pardi.
I highly recommended them. I would make the appointment with Dr. Darrell S. Pardi at the Rochester Clinic. If you are on the mayo clinic connect site, I believe you can make an appointment clicking the appointment tab at the top right of this page. Please let me know if there is any other information you need.
Good luck and good choice!