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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mandyjunebug | @mandyjunebug | Mar 30, 2018

Hi. I don't have a diagnosis let along surgery. I am just beginning my search. There is something seriously wrong with my stomach this past year and doctors have been unhelpful so far. I have to be extremely careful eating or else i suffer severe pain, feeling overfull, nausea and vomiting. As long as i don't eat "too much" or the wrong thing (pasta liquids are my enemies) i manage to get by without symptoms. Instead of an everyday thing now they come on as attacks when i make a mistake. I have had a lot of abdominal surgeries and a lot of other pain not related to eating. Once i even had a doctor tell me i'd had an omental infarction. But so far none of them have brought up MALS. I want to ask, but its tough sometimes, i don't want to get that look...you know the patronizing one that says they think you should not be looking up your symptoms on google. I would like to see a single one of them suffer even half of what i have suffered and not open up google.

Anyway, if there is a good place for me to find a supportive group of people who may share simlar symptoms, even if not a diagnosis, i would love to hear.

I would really like to look at a plate of food without feeling afraid, but in the mean time it would be nice to know some people who understand.

REPLY
2 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 28, 2018
In reply to @kariulrich "I do, but I believe it is due to a blood pressure medication and menstrual cycles...." + (show)
@kariulrich

I do, but I believe it is due to a blood pressure medication and menstrual cycles. Do you have it on both feet or just one? That is important to know. This link maybe helpful: https://www.mayoclinic.org/symptom-checker/foot-swelling-or-leg-swelling-adult/related-factors/itt-20009075

Jump to this post

Hi, roisemaire -- at the bottom of any email you receive notifying you of a post in this discussion, you will see "Unsubscribe from this group." If you click there, you can unsubscribe and stop any further notifications.

REPLY
jjren | @jjren | Mar 28, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

Jump to this post

Thank you for your symptom list. I have many that are on your list. It is a wonder why more doctors don't consider MALS during your first visit.

REPLY
jjrenn | @jjrenn | Mar 27, 2018
In reply to @jjren "Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for..." + (show)
@jjren

Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for MALS.

Jump to this post

I do have forearm and abdominal swelling, but not as noticeable as my ankle/foot swelling. My doctors also have said heart/circulation issues. I have never had ankle/foot swelling prior to 2015. I have trying to get diagnosed since January 2015 for my abdominal pain. I have an appt with my 4th GI doctor this week and am requesting testing for MALS.

REPLY
jmmb | @jmmb | Mar 26, 2018

Hi, I am wondering if anyone that has MALS also has body aches, and bad hip pain? Thanks

REPLY
5 replies
plucky | @plucky | Mar 26, 2018
In reply to @jjren "Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for..." + (show)
@jjren

Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for MALS.

Jump to this post

I have ankle/foot swelling sometimes, also forearms and abdominal swelling. I'm post-menopausal and have low blood pressure. Do you have more than ankle/foot swelling, are other areas affected as well? We think it is related to MALS and/or ME/CFS circulatory and vascular problems rolled into one. I am just starting to have more assessments.

REPLY
roisemaire | @roisemaire | Mar 26, 2018
In reply to @kariulrich "I do, but I believe it is due to a blood pressure medication and menstrual cycles...." + (show)
@kariulrich

I do, but I believe it is due to a blood pressure medication and menstrual cycles. Do you have it on both feet or just one? That is important to know. This link maybe helpful: https://www.mayoclinic.org/symptom-checker/foot-swelling-or-leg-swelling-adult/related-factors/itt-20009075

Jump to this post

Hi could you please stop sending me continues emails

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Mar 26, 2018

I do, but I believe it is due to a blood pressure medication and menstrual cycles. Do you have it on both feet or just one? That is important to know. This link maybe helpful: https://www.mayoclinic.org/symptom-checker/foot-swelling-or-leg-swelling-adult/related-factors/itt-20009075

REPLY
2 replies
plucky | @plucky | Mar 26, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

Jump to this post

Sometimes my replies this past week were blocked by the website, anyone else have this problem? I'd like to reach out to learn more about programs at Mayo in Arizona for MALS. It looks like some of you have experience with them, can you let me know who to phone there to find out more?

REPLY
jjren | @jjren | Mar 26, 2018

Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for MALS.

REPLY
2 replies
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