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

@robinbeth6

I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

Jump to this post

Robin, go to the ER. Go. Any decent ER doc will order another CT scan and certainly help get your pain under control. I've been hospitalized 4 times with MP. You probably know more about MP from Google than your doctor. It's a sad truth. You need a good GI who either has legitimate experience (which is not very likely) or whose ego won't prevent them from referring you to Mayo or a good teaching hospital near you. Fight for yourself. Be your own advocate. Go to the ER, hon.

Liked by kimh, lioness

REPLY
@kimh

I'm from Canada, so I can't help with a doctor. I am under the care of a GI and my family doctor. My GI has taken over the treatment plan (Prednisone, Tamoxifen, and Azathioprine) and my family doctor has been taking care of my pain (in the oxy family). They communicate regularly. At the end of this month, I will be 'celebrating' my fifth year with this disease. I had been in remission for two years, but have been battling a flare up since August 2017. Diet doesn't seem to bother me (I am pretty health conscious to start with), but stress and the weather seem to be playing a role. I have had several relapses while trying to wean off of the Prednisone. We are hoping that we have the right cocktail now! I hope this helps you…

Jump to this post

Thank you
Feel good

Liked by kimh, dementorshoes

REPLY
@dementorshoes

Robin, go to the ER. Go. Any decent ER doc will order another CT scan and certainly help get your pain under control. I've been hospitalized 4 times with MP. You probably know more about MP from Google than your doctor. It's a sad truth. You need a good GI who either has legitimate experience (which is not very likely) or whose ego won't prevent them from referring you to Mayo or a good teaching hospital near you. Fight for yourself. Be your own advocate. Go to the ER, hon.

Jump to this post

What did they give you in the Er?

REPLY

Morphine through a drip.And they also did a ct scan to diagnose and subsequent visits to see if there had been any changes. I have remained stagnant since August 2017. Because of the meds that I am taking, I am beginning to have some sporadic good days where I am able to have a bit of a life!

REPLY
@kimh

Morphine through a drip.And they also did a ct scan to diagnose and subsequent visits to see if there had been any changes. I have remained stagnant since August 2017. Because of the meds that I am taking, I am beginning to have some sporadic good days where I am able to have a bit of a life!

Jump to this post

Do they have any ideas where this comes from?

REPLY

Yes, there are a couple of theories. One is abdominal surgeries (I have had a few!), severe back trauma (2 weeks before I presented with symptoms, I had a horrific fall on black ice!), or in some people there is an underlying condition (such as lymphoma). Mine is a direct result of the fall. I have had my markers checked and do not (thankfully!) have lymphoma. I'm not sure if there are any other connections with this disease.

REPLY
@kimh

Yes, there are a couple of theories. One is abdominal surgeries (I have had a few!), severe back trauma (2 weeks before I presented with symptoms, I had a horrific fall on black ice!), or in some people there is an underlying condition (such as lymphoma). Mine is a direct result of the fall. I have had my markers checked and do not (thankfully!) have lymphoma. I'm not sure if there are any other connections with this disease.

Jump to this post

Not an auto imune disease?

REPLY
@robinbeth6

Not an auto imune disease?

Jump to this post

I also had a hysterectomy but 5 years ago

REPLY
@dementorshoes

Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain perfectly. I was saying it was like an unbelievably painful hug. Or comparing it to back labor. Anyway you describe it, it's legitimately, the worst pain I've ever experienced (and I've had my share). Mine has been going on for 6 weeks now and I've become used to some of it, but there are times it takes me to tears. I actually am currently sporting a black eye from falling after the pain caught me. I was trying to stand when the pain took me to me knees and I briefly fainted, and down I went (I've fabricated a much more entertaining story involving ninjas and a top secret mission). I so hope you get good medical help and find some relief.

Jump to this post

Thank you
This just came from nowhere!

REPLY
@robinbeth6

Not an auto imune disease?

Jump to this post

Yes, it seems to be classified as autoimmune. One of my medications (azathioprine) is an immuno suppressant

REPLY
@robinbeth6

I also had a hysterectomy but 5 years ago

Jump to this post

That could be a connection

REPLY
@robinbeth6

Thank you
This just came from nowhere!

Jump to this post

I hope this helps. But really, you need a good GI who either has experience or who is willing to research and learn. I have been pretty happy with mine, though there have been some frustrating times for sure. I am his only patient with MP

REPLY
@kimh

I hope this helps. But really, you need a good GI who either has experience or who is willing to research and learn. I have been pretty happy with mine, though there have been some frustrating times for sure. I am his only patient with MP

Jump to this post

Where are you located?

REPLY

I'm from Canada

REPLY

Great

REPLY
Please login or register to post a reply.