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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: 10 hours ago | Replies (1229)Comment receiving replies
Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.
Replies to "Hello. I turned 50 in May.. over the past two and a half years or so..."
Hi:
You need to call up the University of Chicago, there is a Dr. there that is an expert in MALS, his name is Dr. C. Skelly and he does the surgery. One of the best in the Country.
@Bachsmbachsmom thank you for sharing the photos, they are helpful. What kind of GI work up have you had, in addition to any vascular work up? The symptoms you are sharing are relatable to all of us!
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Hi @bachsmom
I am amazed at the difference and you say your primary has witnessed this. I really can't believe they have not done much to help you. There was a discussion a little earlier between me and @kanaazpereira regarding the diagnosis of MALs (5 Oct 2018). Kanaaz was saying that MALs is a diagnosis of exclusion; basically going through every other known possibilities and even then they sometimes don't consider MALs. MALs is generally stumbled upon or if a primary or consultant is familiar with MALs they will look for it. My diagnosis took ten years and even then it wasn't the gastro consultant who suggested the angiogram it was an immunologist. My argument was that instead of the lengthy process where I and I believe many others had several operations like an appendectomy or cholecystectomy, before they actually look for MALs. A healthy appendix and gall bladder were removed probably for nothing. It would be better for all if after the usual check on the digestive system they then do an angiogram to check the arteries before they start removing organs. You are a severe case and you have time restraints too so don't settle for anything less, you have been through every possible test. Now be specific, ask for a gastroenterologist and one that has dealt with MALs. Look further down this post, @schaepekaren mentioned Dr Hsu from Connecticut is the most noted or look on the MALs PALs Facebook page where they list Consultants around the USA.
Of course we on the Mayo website are here for you. If you say which part of the USA you are in maybe someone reading will be able to suggest a consultant. As for food, look further down at my recommendation Food for MALs sufferers. If you try it eat in small portions and not every day. I can only manage 1 breakfast bowl full every 3 - 4 days, but its better than nothing. If you haven't eaten for a while all the healthy brown, green and red food will be out of your system. Remember anything white is alright! Stay away if it Red, Brown or Green!
Good luck and keep us posted.
Mark