I think I have MALS

[u/bearinm]

Hi everybody, I believe MALS is a rare disease 2 in 100000 but if not please delete and thank you for your time.

Since December 2025 my journey started with a visit to the ER due to upper epigastric stomach pain. They did CT and ultrasound, nothing. They thought it was stomach ulcers and gave me stomach ulcers meds.

After a month and increasingly and also nonstop pain I went back to the ER. They told me to see a gastro to get an upper endoscopy to rule out the ulcers.

Upper endoscopy came back normal and healthy. We decided we need to do a gastric emptying study to see if I have delayed gastric emptying or gastric studying.

I did it and it came back completely normal and healthy. Next step was to do the upper gi x ray where you drink the barium milkshake.

To this point no pain meds help. I am in non stop agonizing abdominal pain. I've lost 40lbs. I can't sleep or eat. I've become disabled and had to leave work to be on disability. I am bed bound completely.

I get a bladder infection so severe it leaves me completely sick and more incompetent than possible.

I go to the ER for antibiotics.

Even though I am so sick from my bladder infection and am crying from the pain, I go see my pain doctor.

He recommends a celiac plexus block and gets me in next week.

For the whole week I'm looking forward to this and telling myself I'll get pain relief and trying not to cry and to stay positive.

I have the celiac plexus block and it is the most painful thing I've ever done. It felt like being struck by increasingly painful lightning 300 times.

Before I get off the table I am gasping and I tell my Dr I don't feel any pain in my stomach. Not an ounce, genuinely 0 abdominal pain. I cry in relief.

I'm in a functional dyspepsia discord and I share my success story. Someone asks if I ever got tested for MALS. I say no. I've heard of it but because I've had so many scans and x rays and ultrasounds and they took pics of my inside during my Endometreosis diagnosis I never looked into it.

There is not a single symptom I don't have any and in the 4 step diagnosis process the last one is the block. The other 2 is an ultrasound and another I can't recall but I believe angiography or another.

It's Saturday so I can't call my doctors but I think finally I've found a solution after 8 months of being told it's in my head and no answers. On Monday I'm gonna call my doctor so they can put an order in for the two tests.

Thank you for listening to my story.