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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: 8 hours ago | Replies (1229)Comment receiving replies
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
Replies to "Hi @bachsmom I am amazed at the difference and you say your primary has witnessed this...."
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@ukmalsman hi thank you for your response… I live in Nashville. I have just reached out again today for the second time to my gastroenterologist. Asking that they do a specific ultrasound test for the MALS.
My doctors have all been very ‘sympathetic’… some even calling me at 7-8-9 o’clock at night just to let me know that they have reviewed my tests, are so sorry but they have looked at my films over and over and over and they are dumbfounded and just have no explanation for me. They are always very apologetic. They say they know that something is wrong but they do not see anything on the films showing them a cause for my issues.
Still, all the sympathy in the world doesn’t help me.
Although my PCP has personally witnessed my stomach issues, still he does not know what to do...Except to send me to specialist doctors. And I understand that. At least he does that. My PCP before him had me come back for bloodwork every three months for two years before I finally just broke down and lost my mind in his office and begged him to please not make me come back after three months because I could not handle the pain for three more months before doing just another round of bloodwork.
After that I found another PCP who has at least made the effort to find good specialists for me to see.
But You just think that somewhere at some point somebody would recognize this and know what’s causing it.