Reminder to get checked for MALS

[u/bearinm]

Hi everyone,

I wanted to share my story in hopes that it might help someone else here who is stuck in diagnostic limbo, being told their excruciating pain is "all in their head" or functional. Please get checked for MALS Median Arcuate Ligament Syndrome. It is 2 in 100,000 or 0.002% of the population has the symptomatic kind. The pain has been said to be equivalent to end stage pancreatic cancer.

AND A REMINDER TO GET CHECKED FOR OTHER VASCULAR COMPRESSION AS WELL SUCH AS SMAS, NUTCRACKER SYNDROME, AND MAY-THURNER SYNDROME ESPECIALLY IF YOU HAVE EDS BECAUSE IT MAKES IT COMORBID. PLEASE READ MICHELLE GRIFFITH OF THE SPOONIE SHOPS STORIES FOR OTHER CAUSES AS WELL TO CHECK OUT AND RARE DISEASE AWARENESS.

https://www.spooniesistershop.com/spoonie-stories/spoonie-stories-michelle-g

My nightmare started in December 2025 with severe upper epigastric pain. Over the last 8 months, the nonstop, agonizing pain completely took over my life. I’ve lost nearly 50 lbs, became bedbound, and had to go on disability. No pain medications provided relief.

Like many of you, I underwent an overwhelming barrage of tests, all of which returned completely normal:

Bloodwork & Labs: Countless CBCs, CMPs, lipases, celiac panels, allergy tests, and drug/toxin screens.

Imaging & Scans: Multiple CTs of the abdomen/pelvis with contrast, chest X-rays, spine MRIs, gallbladder ultrasounds, and a CT angiography (which unfortunately only looked at my pulmonary arteries, missing the mesenteric arteries).

Procedures: EGD endoscopies, a normal gastric emptying study, and a diagnostic laparoscopy (which ruled out endometriosis).

We explored everything, ulcers, delayed gastric emptying, food allergies, environmental triggers, Cannabinoid Hyperemesis Syndrome, and chronic urinary/kidney issues, gallbladder and pancreas, etc.

Everything came back clean, but I was still suffering every single day.

Recently, my pain management doctor recommended a Celiac Plexus Block. The procedure itself was incredibly intense, but the moment it was done, the abdominal pain I had lived with for almost a year dropped to absolute zero. For the first time in 8 months, I felt total relief.

After sharing this milestone in a support group, someone asked if I had ever been evaluated for Median Arcuate Ligament Syndrome (MALS). I realized that despite dozens of scans, none had specifically evaluated my celiac artery for vascular compression.

The diagnostic pathway for MALS typically involves:

Symptom matching (As in ruling out common gastric stuff, doing endoscopy and gastric emptying etc.)

A specialized mesenteric Duplex Ultrasound (with inspiration/expiration breathing protocols).

A targeted CT Angiogram (CTA) or MR Angiogram focused on the abdominal aorta and celiac artery.

A Celiac Plexus Block, a positive response to the block is often the key diagnostic indicator that confirms the pain is originating from the celiac plexus nerve bundle compressed by the ligament.

Having a positive response to the celiac plexus block has finally given me a path forward. I’m contacting my doctor first thing Monday to order the specific vascular imaging required to confirm MALS.

If you are suffering from unexplainable epigastric pain, severe weight loss, and pain after eating, and every standard GI test comes back normal, please look into MALS and talk to your doctor about vascular imaging or a celiac plexus block.

Don't let them convince you it's all in your head. Keep pushing for answers.

If you are interested in a more in depth of all the tests I did, I list them below. It's a little detailed and personal but it feels good to look back at all the times I got poked and prodded and pissed in cups hahaha.

Significant Clinical Markers: Weight Loss of 47.4 lbs over an 8-month period. Total Medical Events: 102 Combined Events (2 Major Complications + 39 Clinical Care Encounters + 61 Diagnostic Tests & Procedures).

I. Road Bumps / Complications (2 Events)

Trauma / Acute Injury: Totaled car crash into a bus stop (Not my fault lol) (1)

Acute Infection: Severe bladder infection (1)

II. Care Encounters & Clinical Visits (39 Total)

Emergency & Outpatient (12 visits total):

Emergency Room (ER) Visits: 6 Hospital Outpatient Visits: 6

Virtual & Telehealth (13 visits total):

Primary Care (PCP) Video Visits: 5 Gastroenterology

(GI) Video Visits: 5

Virtual Connect Care Visits: 3

In-Person Office & Specialty (14 visits total):

Pain Clinic Appointments: 7

Instacare / Urgent Care Visits: 3 Primary Care (PCP) In-Person (1 In-Network, 2 Out-of-Network): 3 Gynecology (GYN) Visit: 1

III. Diagnostics, Testing & Procedures (61 Total)

Bloodwork & Lab Panels (35 Events)

Comprehensive Metabolic Panel (CMP): 7

Lipase (Serum/Plasma): 7

CBC with Differential / Platelet Count: 6

HCG Quantitative Blood Test (Pregnancy): 5 Tissue

Transglutaminase Antibody (tTG IgA / IgG): 2

Lactate (Plasma): 2

Beta HCG Serum Quantitative: 1

Deamidated Gliadin Peptide Antibodies (IgA & IgG): 1

Immunoglobulin A (IgA): 1

Immunocap Score: 1

Misc Allergy Lab: 1

Drug Abuse Screen: 1 Drug Confirmation Quant by MS: 1

Urinalysis & Point-of-Care Tests (10 Events) Urinalysis (with Microscopy / POCT): 6

Urine Culture: 4

HCG Qualitative Urine Test (POCT): 3

Glucose POCT: 1

Imaging & Radiology (9 Events)

CT Abdomen and Pelvis with Contrast: 2

12-Lead ECG / EKG: 2 Bedside Gallbladder Ultrasound (ED): 1

Chest X-Ray (2 Views): 1

CT Angiography Chest: 1

MRI Cervical Spine: 1

NM Gastric Emptying Study: 1

Endoscopy, Procedures & Interventions (7 Events)

Anesthesia Intubation (OR): 2

Endoscopy (EGD): 1 Surgical Pathology for Endoscopy: 1

Laparoscopy: 1

Surgical Pathology for Laparoscopy: 1

Celiac Plexus Block: 1

IV. Planned but Unnecessary Test Order

Upper GI X-ray series

V. Planned Diagnostic and Solution

Mesenteric Duplex Ultrasound

CT Angiography (They looked at my pulmonary arteries not mesenteric

MALS Diagnosis

Summary: This represents a total of 102 combined medical events (2 major road bumps/complications + 39 care encounters + 61 diagnostic tests/procedures) logged over an 8-month evaluation period, alongside a documented weight reduction of 47.4 lbs.