1. < Digestive Health

Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 28, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

Jump to this post

Welcome to Connect, Bill. We're glad you found this group too. As Lisa and Angela mentioned, there is an active Facebook group. Several Connect members participate in both.

I think most would agree that getting a doctor experienced in mesenteric panniculitis is important. I'm tagging @gmeg @billymac65 @vdouglas @mommasaid on this discussion to see if they have any thoughts about headache and light-headedness.

REPLY
S Jackson | @mommasaid | Apr 28, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

Jump to this post

Thanks I have had more headaches than usual but I think mine were due to an environmental problem I was having I have also had lightheadedness and unsteadiness as well. We do a lot of walking on our Big Dam Bridge and Riverwalk and there is a stripe and I tried to walk it I told my husband if I was doing it for a policeman he would think I was drunk. It comes and goes. I was taking hair skin and nails supplement which has biotin in it briefly and I thought that might of been the priblem so I stopped it. I also had fluid in my ears a while back with ear ache. My local Doctor thought it was TMJ but I was checked for that not long ago and dentist and oral surgeon said no. My Messenteric paniculitis is mild. Just want to know all I can about this. <br />
<br />
<br />

REPLY
Doron | @doron | Apr 28, 2016

I have a mild version of this (initially very painful), and also had<br />
dizziness for about 2 years. I was diagnosed with fluid in the inner ear,<br />
and it turned out to be autoimmune related. Fortunately for me, the<br />
panniculitus was also autoimmune related for me. Since you have similar<br />
symptoms, I would recommend trying Paleo Autoimmune protocol diet. It is<br />
harsh for 6 weeks and then you can start adding in foods. I went from<br />
terrible pain to no pain at all, and as long as I didn't cheat that much<br />
after the first 2 months I am pain free. When I cheat a lot I feel it, and<br />
then need to go on the diet a bit stricter for a few weeks.<br />
<br />
Good luck. Hope this helps.<br />
<br />
<br />
<br />

REPLY
2 replies
S Jackson | @mommasaid | Apr 28, 2016
In reply to @doron "I have a mild version of this (initially very painful), and also had dizziness for about..." + (show)
@doron

I have a mild version of this (initially very painful), and also had<br />
dizziness for about 2 years. I was diagnosed with fluid in the inner ear,<br />
and it turned out to be autoimmune related. Fortunately for me, the<br />
panniculitus was also autoimmune related for me. Since you have similar<br />
symptoms, I would recommend trying Paleo Autoimmune protocol diet. It is<br />
harsh for 6 weeks and then you can start adding in foods. I went from<br />
terrible pain to no pain at all, and as long as I didn't cheat that much<br />
after the first 2 months I am pain free. When I cheat a lot I feel it, and<br />
then need to go on the diet a bit stricter for a few weeks.<br />
<br />
Good luck. Hope this helps.<br />
<br />
<br />
<br />

Jump to this post

Thanks so much I looked at a magazine cookbook st SAMs just yesterday for this type of diet . I tell my friends I can not legally eat anything. I did a test once and it showed the Hunters diet was best for me I think this is same as pales I saved an article about an inner ear etc autoimmune disease need to find it Again thanks so much <br />
<br />

REPLY
Von, Alumni Mentor | @vdouglas | May 2, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

Jump to this post

Hi BILLinDC<br />
<br />
The pain,bloating and nausea stink for sure. I have headaches and light headednes but not that I can tie to panniculitis. I have a lot of pain in the mid section that my doctor can't explain and luckily it has been tolerable.<br />
<br />
I believe my headaches and light headedness are caused by allergy. Seeing Allergist/Immunologist currently to find cause for the headaches and other symptoms. Another CT scan and more blood work. <br />
<br />
Only experienced doctors I've heard about are at the Mayo clinic In Rochester, doesn't hurt to call around.<br />
Wish you luck and good health,<br />
Vdouglas

REPLY
BILLinDC | @billindc | May 2, 2016

Thanks so much for responding. I can only say that we all have to "hang in<br />
there"! J No other alternative. I wish Rochester, MN was closer to DC.<br />
Apparently not much going on up at Hopkins in the way of research, but I<br />
received a nice email from a doc at Mayo who was willing to make himself<br />
available to speak to my GI doc in DC.what a nice thing to do. ~Bill<br />
<br />

REPLY
1 reply
BILLinDC | @billindc | May 2, 2016
In reply to @doron "I have a mild version of this (initially very painful), and also had dizziness for about..." + (show)
@doron

I have a mild version of this (initially very painful), and also had<br />
dizziness for about 2 years. I was diagnosed with fluid in the inner ear,<br />
and it turned out to be autoimmune related. Fortunately for me, the<br />
panniculitus was also autoimmune related for me. Since you have similar<br />
symptoms, I would recommend trying Paleo Autoimmune protocol diet. It is<br />
harsh for 6 weeks and then you can start adding in foods. I went from<br />
terrible pain to no pain at all, and as long as I didn't cheat that much<br />
after the first 2 months I am pain free. When I cheat a lot I feel it, and<br />
then need to go on the diet a bit stricter for a few weeks.<br />
<br />
Good luck. Hope this helps.<br />
<br />
<br />
<br />

Jump to this post

Thanks so much for the Paleo diet suggestion! ~Bill<br />
<br />

REPLY
BILLinDC | @billindc | May 2, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

Jump to this post

Colleen, thanks so much! Glad I found this group. I'm a firm believer in<br />
taking an active role in our recovery and care..this group is a huge help!<br />
~Bill<br />
<br />

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 2, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

Jump to this post

I wholeheartedly agree @billindc. I've seen amazing things happen because of connection people have made in online patient communities like this one. Glad to have you among us.

PS: How impressive that the Mayo Clinic specialist will consult with your GI doc in DC. That must give your confidence in your care. Good for you for advocating on your behalf. I also found other members who have ankylosing spondylitis. I'll connect you on another thread.

REPLY
mjg1160 | @mjg1160 | May 3, 2016

<p>I was diagnosed with Mesenteric Panniculitis yesterday due to a an abnormal CT scan. I really don't have the pain that others describe just the bloating and 'fullness' after eating small portions. Working on finding a doc in my area that specializes in this.</p>

REPLY
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