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.