1. < Digestive Health

Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?

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jpol | @jpol | Mar 16, 2019

I have one strange difference from most people with Mals. I have not lost weight. And when I have pain, i have an overwhelming feeling of hunger and wanting to eat more even though just causes more pain. I currently weigh 300 lbs and am 6' 6" tall.

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2 replies
jpol | @jpol | Mar 16, 2019

I have been to see many drs and been to the er with this numerous times. After a while they all seem to think I was making this all up and it was all in my head. It's frustrating to say the least. One thing that gets me relief is to get in the fetal position if you can imagine a 300 lb man doing that. Lol

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1 reply
jpol | @jpol | Mar 16, 2019

I dont know if it matters but I am also diabetic

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lasirvent | @lasirvent | Mar 16, 2019
In reply to @jpol "I have been to see many drs and been to the er with this numerous times...." + (show)
@jpol

I have been to see many drs and been to the er with this numerous times. After a while they all seem to think I was making this all up and it was all in my head. It's frustrating to say the least. One thing that gets me relief is to get in the fetal position if you can imagine a 300 lb man doing that. Lol

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Don’t give up-keep going and

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 16, 2019
In reply to @jpol "I have one strange difference from most people with Mals. I have not lost weight. And..." + (show)
@jpol

I have one strange difference from most people with Mals. I have not lost weight. And when I have pain, i have an overwhelming feeling of hunger and wanting to eat more even though just causes more pain. I currently weigh 300 lbs and am 6' 6" tall.

Jump to this post

@jpol
I didn’t lose weight either. I did not eat much, but preferred carbs, easier to digest. Also, I had an autoimmune GI illness at the same time- not diagnosed at that time either.

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jpol | @jpol | Mar 16, 2019

Another thing is this time I had this flareup, I have enlaged glands like I have the mumps. and I also have pain in my testicles. Anybody else have these symptoms. I had this about 10 years ago also

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jpol | @jpol | Mar 17, 2019

For other people with mals, does it hurt to exhale very deeply. I notice that i inhale fine but I baby the exhale and never exhale all the way. Every once in a while I have to blow air in order to get enough air or I get out of beeath.

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lasirvent | @lasirvent | Mar 17, 2019
In reply to @dwp60 "Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I..." + (show)
@dwp60

Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I was diagnosed with two small PEs in my left lung. During a follow up CT Scan I was told I have MALs. I’m just starting this journey and have not been able to eat much as well as extreme fatigue and constantly going back and forth to the hospital. I have an upper aortic aneurysm as well as irregular heart beat. I’m not sure what all is going on but I was told my body is deconditioned. I started trying ensure to see if it would help with my lack of eating and the pain in my stomach after I eat. It has not helped. I feel hopeless because so many things seem to be going wrong for me right now. I live in Maryland and will be seeing a Vascular Surgeon very soon. My gastrologist is sending me to Johns Hopkins to meet with a surgeon. He did tell me this was extremely rare.

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Go on Facebook to the MALSGroup. There’s lots of info on mals and doctors

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marideth401 | @marideth401 | Mar 18, 2019
In reply to @sciograndma "Where did you get all of those tests done? I have been very ill, and continue..." + (show)
@sciograndma

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!!

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I had my tests done at a hospital in Toledo. Twenty pounds is a significant amount to lose in such a short time! What is the hold up with the referral to Cleveland Clinic? How much weight do you have to lose before they do something? I’m not a pushy person by nature but, when it comes to my health, I’ve had to learn to be. By the way, Cleveland Clinic has a service where they will review your case for a fee of about $550. You have to get your records, tests, imaging studies, etc., to them and they give you their opinion. Be persistent and don’t give up.

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 19, 2019
In reply to @dwp60 "Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I..." + (show)
@dwp60

Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I was diagnosed with two small PEs in my left lung. During a follow up CT Scan I was told I have MALs. I’m just starting this journey and have not been able to eat much as well as extreme fatigue and constantly going back and forth to the hospital. I have an upper aortic aneurysm as well as irregular heart beat. I’m not sure what all is going on but I was told my body is deconditioned. I started trying ensure to see if it would help with my lack of eating and the pain in my stomach after I eat. It has not helped. I feel hopeless because so many things seem to be going wrong for me right now. I live in Maryland and will be seeing a Vascular Surgeon very soon. My gastrologist is sending me to Johns Hopkins to meet with a surgeon. He did tell me this was extremely rare.

Jump to this post

Welcome, @dwp60, You are going through a challenging time medically, you have a lot of diagnosis happening at once. Take this one moment at a time. It sounds like you are on the right track and your physicians are on top of things. Eating is a challenge with MALS and put on top of that PEs, aneurysm and heart irregularities I can understand your feeling of hopelessness. Out of curiosity have you had any past medical history, connective tissue wise? I do wonder if all these are related or not.

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