Hi! Yes, it took about a week for me to get accepted to the Facebook group but you should hopefully be soon. Make sure you messaged & contacted 'Lisa Schwart Tulsa'. She says herself she gets busy but she is great about getting back to you & ultimately getting added on. Re message her several times- as I had to- if you don't hear back from her. 👍🙏

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Hi! Yes, it took about a week for me to get accepted to the Facebook group but you should hopefully be soon. Make sure you messaged & contacted 'Lisa Schwart Tulsa'. She says herself she gets busy but she is great about getting back to you & ultimately getting added on. Re message her several times- as I had to- if you don't hear back from her. 👍🙏

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Hi kids. Hope everyone is hanging in there. Fresh out of my last hospital stay. Not to sound melodramatic, but I've honestly lost count of how many stays I've had since diagnosed with MP in January. Let's say I've been more in than out. They, of course, don't know what to do other than manage pain and other symptoms. I've shared before that I 'graze' eat to control the nausea. It no longer does, so I'm taking Zofran around the clock. Pisses me off. Suffered a bad bout of pancreatitis, had to be courtesy of MP. I wanted to share that I've been on Protonix, with awesome results. Heartburn is gone. Back on another short round of steroids, but it will end once my PCP has his say. I've graduated to Morphine PO, with Percocet for breakthrough pain, and I resent having to take them them both. I'm waiting on authorization for the cerebral angiogram on my aneurysm (My nice, quiet, killer problem that should take the limelight from the MP, but doesn't.). Ok, I'm done whinning. Try out Protonix, my friends. And hang in there everybody.

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Thank you💐

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This site has been fantastic support for me so I want to add my story.
I was diagnosed with Mesenteric Paniculitus and slight lymph node swelling 2 years ago by CT scan after 6 months of tortuous nausea, burping, gas, abdominal pain/bulging and heart skipping beats when lying down. Also bouts of curl up and die general fatigue/sickness. Couldn’t walk 50 metres. My body felt like I had the flue without the sore throat and headache. No diahorea.
After admitting myself to ER (had to put pain level up near 10 to get action). They did tests but they recommended go to GP to get the CT as hospital hasn’t CT.
In this 6 months before diagnosis, the gastro specialist and doctor did the usual gastroscopy, colonoscopy, scanning abdomen with ultrasound and such – I was diagnosed with heliobacter from gastroscopy and got that eradicated by antibiotics. My heartburn gone – good.
After diagnosis of MP the gastro specialist and doctor didn t know much as there is no protocol to follow for MP. They never see this condition much. Its only by begging for something that the specialist prescribed prednisone. Started 25mg and taper over 10 day. Nausea and fatigue and general malaise lifted. But relapse after 2 weeks off prednisone.
Had to up to 37 mg and taper over 4 weeks and would get 6-8 weeks of normal life until relapse. This regime continued for 2 years. Tried colchicine and meloxicam to wean off prednisone (self prescribed – its in the literature – doctors knew nothing- don’t they read?) But these meds only helped relieve symptoms somewhat. Subsequent CT scan 6 months after initial scan showed MP going and lymp nodes ok. But symptoms still the same. Symptoms manageable – sort of – I noticed that I had to be careful of bending or squeezing abdomen ( eg weeding garden or playing guitar) as this brought on bad symptoms again for 2 weeks or so. Also no late night eating as my stomach wouldn’t empty and got awful pain and bloating. I think some foods set symptoms off also.
What caused this MP? No indications from doctors tests etc but my history leading up to this was that one month prior to first symptoms I had a stroke. Research indicates gut bacteria escape gut after stroke and can cause problems with immune system(nodes in abdomen?). Also previous one month prior I had a very bad case of gastro for 10 days from overseas living in Vietnam. I know I ate something bad haha. Also one month prior to stroke I had a tetanus shot. And the evening before stroke I had the 3 in one hooping cough vaccine (tetanus, diphtheria, hooping cough) Needed the vaccine to visit my premi granddaughter- Were these previous events coincidence or a confluence of events that set it off ? Doctors never gave an opinion on vaccines or these prior events as a cause of MP.
This is the crazy thing. Good news. Just recently I had shingles (doctors say it was from being on prednisone) The doctor initially recommended endep for the pain of shingles but I refused as it makes me incredibly drowsy. He prescribed pregabalin as the next in line med in the protocol. Well it didn’t decrease any pain of shingles but pregabalin took the pain and nausea of MP away and has allowed me to wean off prednisone. I have been off it for 6 weeks and soreness in abdomen virtually gone and I usually have intense nausea 1 hour after eating but that’s all gone. Sort of feel normal.

I hope this continues for me and I hope someone gets something from my story.

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Thanks for sharing. All of our cases may be a little different than one another, but there are always similarities. Funny about the shingles. I've been getting the vaccine to prevent getting shingles due to prolonged dosage of prednisone (since August 2017). I am also having a very difficult time weaning off prednisone, relapsing time and again. My new regimen is to stay on 5 mg. daily until I have reached full remission for 4-6 weeks. After that, we will try to wean down off the prednisone. It really is disheartening to be continually relapsing. Maybe some people just have a harder time weaning off prednisone than others?

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Your story is enlightening as to results after each medical event. I pray you remain well. My MP story led me to Mayo Clinic where an exploratory revealed Stage III B Carcinoid (neuroendocrine) small bowel cancer which was surgically removed. After many years dealing with local doctors unfamiliar with MP, the doctors at Mayo Clinic in Rochester, MN knew what to look for. In my case, MP was a symptom of an underlying disease. I urge anyone with painful chronic MP to pursue a Mayo Clinic consult.

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I would have loved to visit Mayo but I am in Australia hihi

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Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

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