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Mesenteric Panniculitis or Sclerosing Mesenteritis
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Bill
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@mostafaamin, hello again. There is information available but again I don't have the links on my device. Generally an anti inflammitory and pain medication is the first response. Depending on the CT scan results and the symptoms experienced, surgical intervention may be required but only if there is obstruction or other complications. The latter being the extreme.
Good afternoon everyone I have been dealing with my diagnosis for well over a year now. My symptoms have included the stomach/abdomen issues (as everyone else has had. As well all rapidly increasing weakness in all 4 limbs, muscle atrophy, loss of appetite, tremendous fatigue, loss of 85lbs in 5 months, GERD and stomach gurgling (among many others). And am now in a wheelchair and bedridden. To make a long story short I have seen every specialist that my PCP has suggested but no one can seem to completely understand my disease, what the diagnosis is, or much less stop this rapid progression. Today I was not accepted at the Mayo Clinic for an appointment (much less an examination) and wondered if anyone else had any advice or a similar situation?Any advice would be greatly appreciated and we are willing to go anywhere we have to for medical attention to these symptoms and hopefully a treatment plan. Thank youdennisl27
Hello Dennis @dennisl27 , Von here. Sorry to hear you were not accepted at Mayo Clinic, I am disappointed to hear that. Iknow you have really had a tough time with your symptoms and your family has been through such difficult times in the past years. I don't have any suggestions that you haven't already tried at this moment but that doesn't mean there's not a solution or hope. So many go through this, it's sad. It is all about being persistent and finding the right doctor. Again my prayers are for you to find desperately needed help.
@vdouglas
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1 ReactionVonThank you sir!!Your thoughts and very kind words are truly appreciated!Best regards
Hello,
Yes he was diagnosed by CT with MP a month ago from Cairo Egypt. I
have not started any meds yet, all blood tests are normal and there is
no symptom except the feeling of having a solid part on the right side
of the abdomen .
please find the attached files
Best regards
Mostafa Said Amin
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1 ReactionHello @mostafaamin, I am glad to hear you are not having any major symptoms. It is possible that, if you are asymptomatic, no treatment may be necessary. I am not a Doctor and do not give medical advice. The CT scan must rule out other medical issues, but it is documented that the condition may resolve on its own without treatment. The feeling on the right side of the abdomen needs to be looked at by your physician but is similar to what I experienced. Are you still in Cairo?
Best wishes that you continue to be without symptoms.
@vdouglas
Hello again @mostafaamin, I hope you can find this information useful: https://rarediseases.org/rare-diseases/mesenteric-panniculitis/
@vdouglas
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1 ReactionI have a question about Meloxicam.Is it better to take it as needed?Or just to take it daily?I will take it,feel great...then think I can do with out and the inflammation comes back with a vengeance.Anyone else taking it?
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1 ReactionI took it every day for 8 weeks until I got my inflammation under control, then every other day. I have found that if I skip too many days of taking it, I will have a minor set back. When I have a flare up of inflammation, I go back to taking it every day until things are under control again. I always take it with my biggest meal of the day.
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2 ReactionsHello @billindc, I came upon this older post you made and wanted to see how you were doing.
It's kind of coincidental that, in your post, you mentioned your platelets being low. I was just informed my platelets were low and was advised to discontinue taking the 81mg aspirin regimen that I was told to begin about 10 years ago. I have not had my follow up to see if they came back up but am scheduled in January 2017. My baseline CRP was normal after I became asymptomatic. I also take 2,000mg fish oil and wish to use probiotics but haven't thus far. I am including some pickled products like sauerkraut in my diet to see how it reacts in the gut. None of this probably means much but thought I would throw it out there. Good points made on the pain meds legislation and research. Keep up the good attitude!
Is this the study you were talking about? http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf
If I may ask how did your Mayo visit go back in July? did everything work out well regarding the forearm lump you were worried about?
I hope your health continues to get better.
Best regards,
@vdouglas
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