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The Road to a Rare But Real Diagnosis

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It was a test the doctor wanted to run, as it often was found in patients he treated, and could be the cause of the diagnosis I was seeing him for. Or at least one of them.

It was noninvasive, an ultrasound. I thought that surely I didn’t have it, and didn’t fully understand what it was, but given I was sure I didn’t have it, I didn’t bother to look much.

The results came back elevated, indicative of the condition, so he sent me for more tests, to which I had to pre-medicate because of contrast dye allergy precaution. And lo and behold, I “definitely” had neurogenic median arcuate ligament syndrome (nMALS).

Research made it a little easier to understand, but I was still majorly in the dark since “nMALS” wasn’t something I was seeing pop up all that often, and my symptoms were a bit different than the telltale or obvious symptoms.

The next test came when I went out of state to see a vascular surgeon recommended to me by my doc as well as the groups on Facebook. He required a block (numbing of the nerves) after confirming I did have the anatomy, and I did have pain in the area he pressed. (The anatomy is a diaphragm that is too low, causing compression on some nerves, and he said mine was “very low,” “obvious,” and “anyone can see it.” For some reason my mom took this to mean it was obvious just by looking at me, not the test results, which lead to a very funny discussion later on.) And it was a success.

MALS is a condition that causes pain while eating, after eating, just basically related to eating, (but not exclusively) and can be a blood flow issue, hence the vascular surgeon. But it also can cause a wide array of GI symptoms, which were my main ones.

When I got the block, it was like night and day. For the first time in my life, I was able to take a deep breath without struggling to. I used to yawn all the time in an effort to fully fill my lungs, and now suddenly I could breathe so deep with minimal effort, I was seeing stars and was lightheaded.

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They asked if I was nauseous after eating a bit of the food I brought, and I honestly said no, then paused and analyzed what I felt. I turned to my mom and said, “That’s what nausea feels like? I’m always nauseous, I guess.” I had no idea what nausea felt like, until I wasn’t nauseous. I realized I had been nauseous 24/7 before that. I ordered pasta and my mom went to the restaurant to pick it up for dinner later that night while I stayed at the hotel, enjoying my few hours of relief. I kid you not, the minute she walked into the hotel room with the food, I felt like I was whacked with a baseball bat, and the block was obviously wearing off.

My ribs had minimal pain. My collarbone always painful to the touch no longer hurt. I realized things that were better after I was slammed with the pain of them at the end of the block.

I’d made my decision, I wanted to be with this doctor should I pursue surgery, the only fix to the issue. Which I did.

On June 13th of 2019 I started what we in the MALS community call “Life 2.0.” It is called this because the severity and quality of life are so drastically different once the issue has been fixed, the anatomy corrected and blood flow verified or corrected, something as simple as eating is a simple pleasure all in its own.

The first day after, I was on some *fantastic* meds and still numbed up a bit; I ate an entire breakfast, and within a very quick time. Usually it took me forever to eat, and I didn’t even get to order breakfast since I got to my room so late in the day, but they brought me two pancakes, scrambled eggs, bacon, orange juice, oatmeal, a cup of fruit….. Coffee. And I ate all but the oatmeal within 30 minutes. And that was just because they came and took the catheter out and wanted me walking with my walker to get things moving again, and they collected my tray while I was out.

I forget a lot after that for a day or two. The medication was very strong, and I was still slightly under the influence of anesthesia. But the videos my mom took show it, and I don’t even recognize myself.

Despite surgery and pain, I was standing straighter, breathing deeper, and asking for food I was afraid of before from fear of not being able to eat much of it, to eating everything I could.

This all got away from me, I apologize. I started this article with the intention of discussing something I had never encountered in the chronic illness community (or anywhere for that matter) until I started talking to fellow MALS warriors.

Our messages started with, “Can you eat?” “Do you tolerate food?” “What are your safe foods?” “Are you always in pain or only after eating?” “Do you hurt here, too?”

“Can you eat?” “Can you tolerate food?”

I was thrown for a loop.

Not until I was a part of the community did I know, but now I shout it from the rooftops.

Rare diagnoses need to be researched more, looked at as possibilities more, and an agreement of what the actual symptoms are (maybe from a poll of patients?) among the medical community so these things aren’t missed for so many people.

Out of everyone with MALS anatomy, only 1 percent show symptoms.

But that 1 percent is starting conversations with, “Can you eat?” “Can you tolerate food?” and to me that makes me sad.

I am aware MALS is not the only rare diagnosis in the world. But it’s the one I know. I am speaking about all of them. Awareness needs to start. I don’t know how, but maybe my little article here can be some sort of voice, if only a small one.

Photo by Artem Xromov on Unsplash

Originally published: January 18, 2021
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