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There is a good Facebook group with over 250 members. Look under Sclerosing Mesenteritis. Lots of info there.<br />
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Bill my name is Lisa schwart in Tulsa, Oklahoma if you send me a friend request I can add you over to a group with approx 250 members now all across the US and internationally. It's a private group and not searchable due to being a medical group! :)we have members ranging in age 2 thru 80 in there. My daughter was diagnosed at age 14<br />
Lisa 🙂  <br />
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Sent from Yahoo Mail on Android <br />
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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.

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 />
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Hi BILLinDC<br />
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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 />
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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 />
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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

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 />
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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.

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Hi I don't have Facebook. How can I get involve with this group ? (Schlerosing Mesenteritis and Idiopathic Nodular Panniculitis ) . I am an RN and am new to Connect. I am amazed how much I have learned in such a short time, and after so many years of my own research (despite no help from local MD'.s ) Dr Darryl Pardi at the Mayo Clinic was very helpful. <br />
I live in Upstate NY (Halfmoon ) The trip to the Mayo Clinic was worth the cost and effort.<br />
GMeg<br />

What is the treatment?

@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.