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Median Arcuate Ligament Syndrome (MALS)
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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@jmmb, this is an awesome list! Print this out.... because it has symptoms from multiple body systems it will be a lot to go through, but not impossible. Each area needs to be addressed. I had to giggle about not being able to wear a bra..... I remember telling my vascular surgeon that too... it causes to much pressure and it quite painful. Every symptom you have listed here I have had and they are real! This is a great list check things off as they address them.
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2 Reactions@pluckyn welcome to the group!! Mals... well it is a significant surgery and one that is even more complex when you have multiple diagnosis. Trying to weed through what symptoms are causing what is difficult, and in the end I believe all diagnosis contribute to a patients overall well-being, The bowel problems with MALS can get better controlled after the surgery, for me it was over a year before these symptoms stabilized and that is with continued use of medications. May I ask how is your nutritional intake? It does not matter if you are losing weight if you are not getting the proper nutrition, My second surgery I was able to maintain a stable weight by eating m&m's .... A LOT... they were the only thing thing I could tolerate, however I was malnourished, weak and spent most days in bed due to fatigue. Mals contributes to a lot of symptoms but so does ME/CFS. Hard to get both under control, but it is possible.
Thanks Kari, it is a list for sure....embarrassing but unfortunately real like you say. There are so many symptoms that are overlapping of other things. we will see what happens at the cardiac electrophysiologist...... I am going to pm you if that is ok... oh and I saw Robin's article on Mals Pals...it was awesome!!! Thanks,Jill
Hi Kari, I'm just catching up. My life is pretty quiet except just had a crazy week of crisis management for two random events that fell out of the sky. Now that those are dealt with, back to MALS!
I was focusing on ME/CFS because that has been my only diagnosis from Canada. But they also knew I had MALS and told me it was not treatable, that fixing it was only a cosmetic surgery and therefore not covered by public healthcare, that I look fine, that it's not a real illness, etc. I was left to manage my ME/CFS symptoms on my own since there is a 2 year wait to get into the Provinicial Chronic Illness Management Program in Vancouver.
I take digestive enzymes with most meals especially if there are vegetables, and lactase if there is dairy. I also have a protocol for gut repair with glutamine and probiotics after having a bout of bad bowel symptoms such as gas++ diarrhea pain. Potato chips are my fallback food when bowel symptoms are too extreme. After my appendectomy I had diarrhea for 10 months and saw dieticians and was very weak and malnourished. They had me mostly on a BRAT diet, then gradually added canned vegetables and now eat very small frequent meals that are nutritionally good.
@jmmb, I just read in your post that you will be traveling to Mayo Clinic. I want to let you know that we have a discussion group "Visiting Mayo Clinic" where you can meet other members who have also traveled there. If this is your first trip to Mayo, I think you will find some information that can be helpful to you. You are always welcome to visit and to join any conversation there.
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
I wish you a safe journey.
Rosemary
@jmmb, I am out of my experience in this discussion, but I want to assure you, from my experience, that at Mayo Clinic, there is no such thing as too much background information, and no such thing as a dumb question.
Rosemary
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1 ReactionThanks for your info Jill! I appreciate your sharing how much went into your lengthy run of diagnostics, long surgery, complicated family situation. I'm sorry you had so much stress and hope things are better. My own lengthy illness with no explanation experience was stressful too: not tolerated by my 'fair weather' family and friends. The dynamics were so intractable and increased my ill health so much that I finally left them behind to find healthier environments and relationships.
I am in SoCal now and have a good PCP doctor and my current dilemma is which specialists to work with. He also said the journey of diagnostics is just beginning, so hold onto my hat for a ride, so don't know about compression or others stats yet.
The Gastro I met last week was awesome; saw that my weight is not an issue and took the time to look at lists of symptoms on his computer as we sat, and also noted my own symptoms and personal challenges. He was agreeable to do the surgery, and we're waiting for the vascular surgeon who ordered my CTA and whom I've never met in person to decide. I've heard good things about this vascular surgeon and My PCP is going to consult with him again but I'm a bit concerned at how he hasn't met me in person yet.
History: When I was pregnant in Canada 35 years ago, my GP told me he heard a funny bruit in my abdomen and told me I might have an aneurism, but since I was pregnant he wasn't going to do anything about it. I didn't understand the implications then and there was no follow up since the birth. I've had lots of symptoms with fatigue, food intolerances, allergies, ME/CFS etc. ever since.
Your comment about SIBO is interesting. I just looked that up and see that I've been eating as if on those diets for the past several years mainly because my symptoms ease when I do. How do those diets work for you?
I have had low level anemia for years and will see a hematologist tomorrow, as there is a family history of CLL leukemia, or this may be due to MALS. Same with low thyroid, could be MALS...are these symptoms you know about? Best...Susan
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1 ReactionMy heart goes out to you in trying to manage multiple diseases! I am right there with you. I do believe we need to create more awareness in MALS, having patients define the symptoms, and collaborating with healthcare providers on how to manage these symptoms so that our quality of life is not such a struggle. It gets very tiring fighting for yourself and getting validation that what you are going through is real. I am so happy we have groups such as this to make life a little more bearable. When random events fall from the sky, such as you have described above the set back and where to go next can be OVERWHELMING to say the least. I am have discovered being in a state of fight or flight is a constant for us MALS people. It causes great stress and anxiety daily, even when we do everything in our power to manage symptoms appropriately. I have done meditation, acupuncture, psychological therapy, nutrition therapy, visualization, massage therapy... you name it I have tried and continue to use the methods that have worked best for me.... however with all the best intentions and dedication to get a handle on MALS it is a daily challenge. When I have my symptoms under control through the use of medication for pain management my quality of life is considerable improved. I feel frustrated at the simple fact that many of us have a chronic disease and even when we accept that and do our best to manage it, we have a fear of not be treated. Interesting that potato chips are your fall back food, I get that!! The sodium.... I bet your body is craving the sodium. Are you able to take in fluids? When my pain is at the greatest fluids can also be difficult.
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1 ReactionThanks Jill this is very validating and lengthy is okay. I had sent a very similar list to my PCP last week, to address any thoughts that weight loss is the only real problem to address in MALS. And no bras for me, either especially when eating 🙂
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1 ReactionHi Kari, I'm so glad you asked about fluids. I know that keeping my fluid intake high is important and find electrolyte tabs like Nuun and Gu very helpful. I'm on a high salt diet and I think the potato chip fat calms my gut and the simple carbs give calories. My dietician was very excited with the novelty of telling someone to have more salt in their diet!
But I also have made the mistake of convincing myself that fluids will be easier to pass than solids. It's often not true: right now my stomach feels like a sloshy water balloon from drinking a lot of water today. I have learned not to have more than sips of fluids with meals or I will have reflux.
I was taking Tylenol for abdominal pain but found out I also have some NAFLD and decided to avoid things that are hard on the liver.
Wouldn't it be great if we could meditate the MALS away? Having peers to connect with is wonderful, thank you and everyone here for this group!