Median Arcuate Ligament Syndrome (MALS)

This is great! Thank you so much!

You are very welcome!

Anyone looking for pediatric MALS info... found this abstract today: https://www.liebertpub.com/doi/full/10.1089/lap.2013.0438

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

@jbdforisu

@jbdforisu I am so happy you found us and welcome to the group! Your fears are completely understandable, and as a MALS patient (Mother of 2 boys) I am always concerned that they will end up with this someday. There are some cases of MALS being familial, however, more research needs to be done. Here is a link to an abstract that you may want to read: https://www.ncbi.nlm.nih.gov/pubmed/21129525 As far as testing, you are symptomatic and I don't want you to be frightened about the workup, you need to be checked out to find the cause. Who is your appointment with? We are here for you, you are not alone. No matter what the diagnosis the MALS group is awesome in supporting those who have symptoms.

The symptoms you describe are very similar to my own which started a few years ago. There is much that is unknown about MALS including any congenital and hereditary aspects. I do find it interesting that your uncle has it though. Studies show that MALS is more common than they thought and some people exhibit no symptoms while others have severe, debilitating symptoms. I’ve had CT angiography with and without contrast, mesenteric duplex ultrasound to check blood flow through the celiac artery and compression of the celiac plexus, an MRA and MRV, a swallow test to check flow through the duodenum, and a jugular venogram. Have you had some of these tests done already? I have celiac artery compression syndrome (basically the same as MALS), Nutcracker Syndrome (renal vein compression) and pelvic congestion syndrome (L ovarian varicose vein). These diseases can sometimes present together. Do not let these doctors tell you this is all in your head. Remember that they work for you! Educate yourself and advocate for yourself. I am sending my records to a MALS surgeon in Connecticut for another opinion (Richard Tsu, MD). I found his name on the Facebook MALS Pals support group site. You might be interested in checking that out. I pray that you’ll get some answers and experience relief from these annoying, painful problems soon. Also, you are not alone! There are many of us.

Where did you get all of those tests done? I have been very ill, and continue to get worse. Have lost an enormous amount of weight. ( Averaging 20 pounds per 21/2 months!) we live out in the boonies...far from good medical care!! I am praying to get a referral to Cleveland Clinic right away! Sure hoping it isn't too late for them to find out what is wrong and be able to help me!! Not sure there is going to be any coming back from whatever is wrong!!

Thank you @sciograndma @marideth401 and @kariulrich I have not lost any weight, however, I have been the same weight since I was 15 which is strange to me. I have always had stomach issues from epigastric to gastroparesis (never diagnosed but suggested by the doctor that did my endoscopy) as well as irregular menstrual issues. I have a history of headaches and migraines, depression and anxiety, and something strange I've noticed since reading case studies is the fact that I burp what seems like constantly, especially while and after eating. I also have a history of back pain and fatigue, but all of these symptoms are so vague and complained about by so many people that I've always dismissed them.

I am seeing my new family doctor as a routine checkup (different doc than the several that followed my symptoms in 2017). I have gone through many xrays, ct scans, I had an endoscopy done (showing a small hiatal hernia), that test where I swallowed nasty stuff and they watched it go through my system (showed severe acid reflux), and loads of bloodwork done. So much of my testing was done in an ER setting because the pain would always bring me in and I didn't have family doc until this year. I am scared of getting more workup done, both that they will find something really wrong like MALS, or that they will continue to tell me that I am fine. My adopted family thinks I am a hypochondriac, which has been really hard for me because I feel as though I can't talk about my symptoms to them but I don't want to go through all of this testing alone.

How do I bring this up to my doctor without him thinking I am crazy or have him convinced that it's just my gerd or IBD? He has been super great since I've been seeing him, but we haven't gone into detail about my stomach because we've been working on anxiety/depression stuff. I have also looked at the list of surgeons that have been recommended by patients. Only one is from Iowa! That scares me also. Am I able to ask for a ct scan of this artery? How do I know that they are educated enough to notice if it isn't normal?

I appreciate all of your support. I feel alone here at college with all of this discomfort.

I have had this severely since October. I have Cauda Equina Syndrome and, as is the case with that, I have frequent UTIs. In October, I had another one and the Dr (NP) who was seeing me at the time gave me an extremely strong antibiotic called Monurol. About 2 days after I took it, I could no longer eat w/o problems. I would retch mucous (never threw up food)...and it would be right after a meal. ER doctors gave me all kinds of different meds, but they all made me worse. Since October, I have lost nearly 65 pounds. Any Dr I have seen would just give me other meds. Begged to go into the hospital for tests...they would do out patient ones., and the all came back normal. So I was continually told it was all in my head. Consequently, I let things go WAY too long. Now I am desperate!!! Sure hope if I can get to Cleveland Clinic that some specialist will be able to find something!! I KNOW that the stress I have is NOT the cause, it is because I have not been able to find answers, and I continue to drop weight and get weaker and weaker!! Am at a point where I can do practically nothing!! Hoping my Dr will refer me to Cleveland Clinic!!!