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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, I hope it is okay if I tag you when I see a question about the AZ Mayo Clinic location. Rosemary
Sometimes I find even water to be so difficult. When I have really bad pain, like my chest pain, I drink some water and makes it so much worse!!! Strange things we have...
@plucky you sure have had your share as well. Good for you to get out of a negative environment. My parents were supportive, problem was after my first surgery my dad suddenly passed, of course I was devastated and my mom had beginning signs of Alzheimer's. My 2 sisters were like, well your off you take her.....yea off because I just had an open surgery and was just using a walker to get around...plus they decided to say I was taking money, they were not happy my dad left me POA and all....well that may be why my dad did that....anyway, then my mom passed from a stroke, I think she was heartbroken without my dad, and my sisters pissed her off....my mom was a crackup....so I had to get out of there. to many horrible memories. I have two wonderful children who have been so helpful, and my husband. Of course all that stress didn't help that situation...oh boy sorry, I am going on. I get so angry cause I wonder how my health would be if it wasn't for all that, 3 years of hell. That has a huge toll on the body. But I am trying....I know it is so hard to know what symptoms are from what. So many overlap. I did try all the diets, none really worked, but then again could have been because of the MALS. Also you can blame so much on the CFS....I just keep researching. The more knowledge you know the better. If you find a dr. that dismisses you and that knowledge, you need to go somewhere else. Unfortunately I have had that and I am sure almost all of us have, but don't let them win. You know your body. I was up and down with the anemia. I took supplements though and now ok. A lot of my blood work comes at like the highest or lowest range number so its not flagged so they say it's ok, so I don't know. I don't think that is ok. If a number is that close and your symptoms go with that, there is probably something wrong/off. Everyone is not the same and fit in a box. A lot of the naturalpathic drs. believe that but the problem is insurance doesn't cover them a lot of the time. I did go to one for awhile, but had to stop due to money issues. So I know you are in Canada so I don't know how that would work there. I don't know if I answered your questions. A lot of people have different symptoms for MALS, but most common are the pain after eating, bloating. Some people don't have compression, but the nerves are being pushed on by the diaphragm. If you go onto MALS PALS you can get a lot of information there. I am trying to also find a online support group for ME/CFS. If you know one let me know. Hang in there. It is a long process, just try to stay positive and when you find it to hard reach out to someone on here, I am on a lot or just message me . I know it is hard and sometimes you just want to say I give up, but you can't!!!
Jill
Thank you @rosemarya . I have been going to Mayo for quite awhile now. I go to the AZ clinic.
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1 ReactionWelcome, @astaingegerdm. Thank you so much for sharing your history.
You might also wish to read some of these conversations about SIBO on Connect, https://connect.mayoclinic.org/discussion/small-intestine-bacteria-overgrowth/. If you are able to share, I'm certain that members in that discussion would appreciate hearing about your health journey, especially about learning to manage SIBO and GERD. We look forward to getting to know you.
Hi 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!
Thanks 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 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 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 Reaction@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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