Mesenteric Panniculitis or Sclerosing Mesenteritis

@chensley638 Once you get through the GI exam, the endocrinologist might be a good next step for you. It sounds as if you have been making progress in working through your symptoms and getting help, but it does sound complicated. Has your endoscopy been scheduled yet? Teresa

Yes. It will be for August 7th. I do plan to see an endocrinologist at some point. If nothing else, for the potential PCOS.

Had MP for 10 years now severe pain on right side and pelvic area taking tramadol for last 2 years. Have been going to Stanford Medical pain management for about a 1 1/2 years now with little relief. Have had trigger point injections and 1 nerve block but was of no help. Have lost 30 lbs since January 2017 with night sweats thought my Valley Fever was back but infectious disease doctor in Bakersfield, Ca. says no. He is supposed to be one of the best VF doctors in the country. Stanford Medical has no idea, have had thousands of dollars worth of testing everything is normal. Also have pimple like sores that come and go think it might be related to my MP. Stanford Medical doesn't treat MP any suggestions on anyone on the west coast that knowing anything about MP? If I have to will travel to Mayo on East coast for relief? Thank you in advance. Robert

I also have had MP for years. Your symptoms sound very much like my own. Sadly no relief only from pain meds on a regular ongoing basis. I am just curious if anyone that has been to Mayo Clinic at any site and has ever achieved relief on a long-term basis from Doctors seen at these sites? Just curious if there is justification for traveling and waiting, testing and then no positive results?

@carbxbe8206 and @bakb I would like to invite our Members, @billymac65 and @vdouglas, to join us in this discussion. They have been treated at Mayo in Minnesota. I hope that they can add something helpful from their own experience. Teresa

Welcome to Connect, Robert @carbxbe8206.

I'm sorry to hear about your symptoms, and so glad that you've joined this Connect group. You will meet many members who understand your pain and frustration.

I'd like to start by giving you some information, if you wish to seek a second opinion from Mayo Clinic. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Here's a patient story from Mayo Clinic, which you may interest you:
Research forges path to effective treatment for sclerosing mesenteries: http://mayocl.in/2tUbBHt

I’d like to introduce you to several other Connect members who live with MP, several of whom have been seen at Mayo Clinic. Please meet @billindc @warlick @missisays7 @mdav1943 @doron @croller68 @mardellepoff @gmeg @danrofohio.

@billindc, and @gmeg have also discussed finding "bumps" on skin, and I'm confident they will return with more insight for you.

@carbxbe8206, have you tried any special diets (FODMAP, for example)?

Some of that sounds like you need to see a rheumatologist. The rest, i have no idea. 8m still new with all of this.

Was going to make a general post, but for some reason do not know how to do that (any help along those lines would be greatly appreciated), so putting some info here in the form of a reply. Planning a trip up to Mayo soon, due to such a lack of expertise in DC about this rare disease. With respect to lumps, I have found a small lump under my forearm skin before, and of course, start jumping to worst case lymphoma scenarios, etc. (Has anyone seen the research that seems to indicate that about 28% of MP patients have another, sometimes hidden, malignancies?) I plan on getting it checked out next week. Has anyone had elevated CRP (C-reactive protein) levels with negative ANA and normal sed rates with their MP? My platelets also went low but came back up. I recently experienced that, along with a measles-looking rash and low grade fever. I have not seen anyone mention those symptoms on here before, and wondering if they might be related to MP. Lately, Omega- 3 fish oil and flaxseed powder: one tablespoon in a protein drink daily, have seemed to calm down MP GI symptoms for me, along with probiotics. It keeps me off the pain meds, which recent legislation has made more difficult to obtain for legitimate patients. The harder part for me is keeping a good attitude in light of the fact that there is no real incentive for any drug company to develop a treatment, even if enough patients could be gathered for any type of clinical trial. Just too rare. Dealing with a poorly understood illness that waxes and wanes is, I think, the worse part. My heart goes out to all the sufferers on this site, and I'm so glad we at least have kindred souls with whom to share information and bolster spirits. I try my best to remain in the present and take one day at a time. ~Bill

Hi, @billindc. Repying to an existing post on the disease you wanted to discuss with other members is a fine way to do it. However, if
you want to start a new discussion, go to the group's page (here, Digestive Health, http://mayocl.in/292wLFY) and you will find there on the top left under the Discussions tab a gray box that says "Start a Discussion." When you click that, you will then have the opportunity to start and title a new discussion, if you wish.

I just found out I have mesenteric panniculitis after having a CT scan in the ER. I have a follow up appointment and I am trying to find out as much as possible. What questions should I ask the doctor? What test do I need to have and which ones should I avoid? They have me following up with a surgeon, is this the kind of doctor I need to see or should I be following up with someone else. This surgeon does specialize in the upper GI tract. I read this is rare but treatable and sounds like it can go in remission. Am I right. I also have another rare disease called Avascular necrosis or AVN - which I got from taking steroids for my asthma. I saw that steroids is a treatment for this, is there others? Any information would be greatly appreciated.