Median Arcuate Ligament Syndrome (MALS)

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!!

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.

@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.

@jbdforisu

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

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

You are very welcome!

This is great! Thank you so much!

I joined MALS PALS and so glad I did! There's comfort in sharing in our common malady and potential treatments - as a Team. Thank you!

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.