1. < Digestive Health

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

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PCfromFM | @pcfromfm | Sep 28, 2017
In reply to @poppy73 "i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I..." + (show)
@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!"
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PCfromFM | @pcfromfm | Sep 28, 2017
In reply to @lockedavid "Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I'm reading..." + (show)
@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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Poppy73 | @poppy73 | Sep 28, 2017
In reply to @lockedavid "Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I'm reading..." + (show)
@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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Locke | @lockedavid | Sep 28, 2017
In reply to @lockedavid "Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I'm reading..." + (show)
@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.

Jump to this post

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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denia | @denia | Sep 28, 2017
In reply to @lockedavid "Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I'm reading..." + (show)
@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.

Jump to this post

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.

REPLY
Poppy73 | @poppy73 | Sep 28, 2017
In reply to @lockedavid "Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I'm reading..." + (show)
@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.

Jump to this post

I have Raynaud's too.

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PCfromFM | @pcfromfm | Sep 28, 2017

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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Von, Alumni Mentor | @vdouglas | Sep 28, 2017
In reply to @poppy73 "Well its official , I am diagnosed. I guess it is good to know what is..." + (show)
@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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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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Von, Alumni Mentor | @vdouglas | Sep 28, 2017
In reply to @poppy73 "i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I..." + (show)
@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

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

REPLY
Von, Alumni Mentor | @vdouglas | Sep 28, 2017
In reply to @poppy73 "i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I..." + (show)
@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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