Mesenteric Panniculitis or Sclerosing Mesenteritis

Yes we are here Mr Rick! An interesting and interested group of warriors who share as much as we can about this crazy illness!! How are you doing-pls share you experiences!

Hello @ricklaff51 , I join @pcfromfm in welcoming you to the Mayo Clinic Connect. Yes the Connect community is still active and ready to listen. As you may already know, we are a group of patients and caring individuals who have experienced the struggles of dealing with Mesenteric Panniculitis or Sclerosing Mesenteritis.
How are you today and what brings you to the Connect?
@vdouglas
von

Hi Rick, I add my welcome. The support in the Mesenteric Panniculitis/Sclerosing Mesenteritis group remains active. Glad to have you join us.
Please note that I removed your personal email from your message. Mayo Clinic Connect is a public forum and we recommend not posting your personal contact information to avoid getting unwanted spam.

Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

Hello @gabrield , I hope you are doing well despite the diagnosis and we all welcome to the Mayo Clinic Connect. We are glad you chose to join the group.

We understand and have experienced many of the struggles all too typical of this disease. Maybe we can help should you have questions.
@vdouglas
(Von)

Is there any actual difference between SM and SP?

Hello @gabrield , That is a very good question and one that is not easily explained. SM and SP seem to be used universally and I’m not sure if there is any difference at all in recent terminology. I have read that there are three stages to the disease, and having the first doesn't necessarily mean you will progress to the third stage. Documentation to support this can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

There is some additional information that could explain the difference between the two. Here is an excerpt of that information: "It can be categorized according to three pathological changes: chronic nonspecific inflammation, fat necrosis and fibrosis[2]. This varied terminology has caused considerable confusion, but the condition can now be evaluated as a single disease with two pathological subgroups. If inflammation and fat necrosis predominate over fibrosis, the condition is known as MESENTERIC PANNICULITIS, and when fibrosis and retraction predominate, the result is RETRACTILE MESENTERITIS. The overall presence of some degree of fibrosis makes the pathological term SCLOROSING MESENTERITIS more accurate in most cases[3]". You can find that information here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

I hope you are doing well, does this information help?

@vdouglas
(Von)

Yeah thanks. Talked to my Dr. he acted like it's no big deal, no need to see a specialist or anything. I kind of question that decision.

@gabrield, yes very common because they don't understand the disease. If you are having symptoms, or not having symptoms, you may want to see a specialist who understands the progression of this disease. Even if it is just for peace of mind knowing what organs, if any, are affected. The Mayo Clinic Gastroenterology Department in Rochester Mn. is well versed in evaluating the disease. Once again, there is no cure, but there is treatment or no treatment at all required if your symptoms are manageable and the disease is not progressing.
I hope you are doing well and best wishes to you. Are you managing alright?
@vdouglas
(Von)

I understand the frustration, my own PCP had the same comment. He's very clueless and seems not to want to be educated on my condition. I had asked to be referred to a doctor with some experience but he decided on his own to contact top doctor at Dartmouth Hitchcock. He then came back to me regarding a slew of medications for me to try. I had asked him do to my allergy to certain NSAIDS would these affect me, and of course he stated, well I'm not sure. So I was officially diagnosed with MP 1/2016 and still cannot find a medical professional with any education on the subject. I've had 2 severe attacks and 2 minor attacks of MP, hoping never to have another one.