Median Arcuate Ligament Syndrome (MALS)

Hello all, my name is Jinni and I am a 20-year-old college student. I have had stomach issues my entire life and went through extensive testing in 2017 during my senior year of high school. Everything came back normal and doctors only settled on the classic concepts of "stress," "GERD," "gastritis" or "IBS." I continue to have pain and discomfort when I eat, ranging from a tight, pressure-like feeling when I eat much or fast, then pain when it hits right under my ribcage, and then discomfort and nausea for hours afterward, and it's seeming to get worse over the last few weeks.

My uncle was just diagnosed with MALS, which is how I first heard of it. His symptoms seem much more severe than mine, but I can't get the idea of the possibility out of my head that I might have it too. I have seen no research on whether or not MALS could be hereditary, but I have seen that it is much more common in women. I'd like to talk to someone about this all, I am scared to move forward with testing. I have an appointment in a couple of weeks, but I am worried about bringing it up to my doctor because I don't want to hear anyone tell me that I am overthinking it or that I'm overreacting or that there are no more tests to be done. I am beyond frustrated that everything has come back normal because this much pain and discomfort just cannot be normal. I feel very alone in all of this because I feel like everyone is sick of hearing me complain when they all think I am fine.

I saw this connect group and hope I can get some thoughts/opinions on how to move forward if my symptoms even line up with what a MALS patient has, or just any other support going through this. I hope you all are doing well.

Best,
Jinni

This is great! Thank you so much!

Hi everyone! Hope this finds you all more that just surviving today. MALS PALS just updated the Doctors List Today! So grateful to Robin Schrader for keeping it updated regularly.

Thinking of you @davemazon, not everyone looses weight with MALS. Your PCP sounds like he is on top of things as there is a concern for ischemia. Have they considered doing a cath angiogram? At this point it maybe something to consider... there is something called IVUS... it is an ultrasound inside the arteries and they can take pressure readings. You may want to look into that, I believe there is even better technology than IVUS now. Ask for a consult with interventional radiology.

Hi, All. I've been diagnosed with severe narrowing/stenosis of the celiac artery. Today the Thoracic physician said he is still not sure it is MALS because I'm not losing weight. I'm actually in the hospital now, admitted last night from ED. I was sent to ED by PCP, who was concerned my pain could mean ischemia/organ damage given severity and duration I've been in this state. I have many of the symptoms mentioned in this forum - severe abdominal pain (both sides but predominantly left, under/around ribs and radiating to back) nausea lasting for hours and days, shortness of breath, weakness, chest pain, headaches. A CT from an ED visit in September of 2018 revealed stenosis and poststenotic dialation. What a journey to get to this point. Its been an uphill battle, really. I've had to be my own advocate - reading, researching, insisting on being seen and being taken seriously when dismissed and pushing for more testing when something was ruled out. Most important is to maintain hope. I really want to consult another physician/Team. Can anyone give some recommendations? I believe UPMC is the next closest health system to me. Thanks!