Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

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

@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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Hello @pcfromfm, Welcome on the Mayo Connect. Its always good to hear someone has found the Mayo Connect helpful and informative. That’s something we all like to hear because helping each other is what it’s all about.

I have been to northwestern Canada, Vancouver area and Victoria Island. It’s very beautiful there. Which part are you from?
I believe you mentioned that you had Mesenteric Panniculitis for quite a while. How are you doing with it currently?

@vdouglas

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@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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Interesting…I will get reactions from heat too.For the longest time I thought oh this is just winter skin.but it happens in the summer too. I can feel the pain from deep under my skin,then I welt.It is pretty miserable.

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@poppy73

Well its official , I am diagnosed. I guess it is good to know what is wrong. I am suppose to keep at food journal to see if certain foods bother me.
Does anyone have foods that seem to make their pain worse?

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Thank you for the welcome @vdouglas.

So far I am pretty discouraged with it all.I went to a GI specialist and the doctor just looked at me and asked what I wanted him to do.
It was crazy….They referred me on to a research facility in Seattle that has not even called me and it has been three weeks.It is good that the first choice isn’t necessarily biopsy,though I will do it if that’s what they want. Just want to get started here.Thank goodness for this page!

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Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I’m reading and I don’t cover up and my abdomen gets very cold … then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I’m ready to sip my tea, everyone else has finished theirs! I’m sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

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@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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Hi @popy73 -I have had so many strange skin reactions. I went for years not being able to have even shower water hit my skin without welts. But as I age hot and cold generally bothers my skin and my whole being -feeling ill inside and out. Keep moving, keep smiling!

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@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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Morning @vdouglas -we are blessed-Canada being a beautiful country! I live far north in Alberta on a river that flows north. Diagnosed about 2003 at a University hospital (happened to get very ill in a southern city where my daughter is a nurse) with a CT. But think I’ve had these symptoms since I was about 8. I “manage” most of the time -strongly watching diet, getting much rest, as little negative stress as possible-quite well. But the pain only hides behind a thin smile. Retirement has helped! I live in a community where there is no informed doctor, no other diagnosed person that I know of and only emergency services to resort to when symptoms bloom. It’s an oil city where people including Doctors come and go so medical help is inconsistent. I have no specialist to rely on. Many Doctors scoff at my mention of such a “made up” diagnoses! (Keep moving, keep smiling!”

IMG_7727

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@lockedavid

Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I’m reading and I don’t cover up and my abdomen gets very cold … then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I’m ready to sip my tea, everyone else has finished theirs! I’m sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

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“Tarred with that same brush”-as they say! Interesting!

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@lockedavid

Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I’m reading and I don’t cover up and my abdomen gets very cold … then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I’m ready to sip my tea, everyone else has finished theirs! I’m sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

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Me too.For a while doctors were testing me for Lupus and thyroid disorders because was so sensitive to sunlight.Raised welts on my cheeks and arms.I have had the stomach too…anywhere I have a break in clothing.

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@lockedavid

Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I’m reading and I don’t cover up and my abdomen gets very cold … then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I’m ready to sip my tea, everyone else has finished theirs! I’m sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

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My mother gets what she calls “sun poisoning” where exposure to too much sun can raise welts and bumps on her skin. I’m fortunate to not have that variety of sensitivity. And I’m not, as far as I can tell, any more prone to sun burns than the average person, and I don’t get welts or bumps from the sun. I would like to believe we will understand all of this some day … but despite enormous advances in treatments for some diseases, we seem to be no closer to understanding some of the very basic perturbations of our physiology …

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@lockedavid

Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I’m reading and I don’t cover up and my abdomen gets very cold … then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I’m ready to sip my tea, everyone else has finished theirs! I’m sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

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I also have Raynaud’s, which makes me very sensitive to the cold. I have noticed my belly gets extremely hot after I eat, especially during a a flare.

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@lockedavid

Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I’m reading and I don’t cover up and my abdomen gets very cold … then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I’m ready to sip my tea, everyone else has finished theirs! I’m sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

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I have Raynaud’s too.

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My thyroid does not work and medication doesn’t help like I would like it to. My internal furnace just is not working properly. Years ago I was checked for Lupus. I haven’t seen any doctors for years about most issues. I do worry about passing these issues onto my children/grand children, and watch them more carefully. My city has no Doctor really interested in theses issues. Keep moving, keep smiling!!

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@poppy73

Well its official , I am diagnosed. I guess it is good to know what is wrong. I am suppose to keep at food journal to see if certain foods bother me.
Does anyone have foods that seem to make their pain worse?

Jump to this post

Hello @poppy73, Sometimes doctors can have pretty bad bedside manners and that really doesn’t help us when we are scared and looking for answers. You said it right, they are just overloaded with patients and a little beat down.

You will need to be very proactive if you want things to move forward regarding your health. You will need to call your GI’s office and ask them to tell you what is going on. You will also need to get the name and number of the research facility so that you can follow up with them. It’s not like it used to be.

Keep us posted and best wishes to get this resolved
@vdouglas

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@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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Hello @pcfromfm, Morning to you as well. I was expecting you to respond to my comment about Vancouver being northwest Canada. It is northwest from Las Vegas where I live. You live on a river that flows north, I don’t believe I have seen a river that flows north, that sounds rare. It’s good to hear that you are managing even if it is behind a thin smile. At least it is a smile and others need to hear that. Your story is that of a survivor and how you are able to deal with this illness all while living in the Canadian wilderness.

You say that you strongly watch your diet. Anything that sets things on fire?

Best wishes for your continued smile,
@vdouglas

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@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

Jump to this post

@pcfromfm
love that photo!! How’s the fishing?

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