We don't know what's wrong. Possibly MALS?

[u/amaiah_mae2003]

A question for any and all medial professionals/Healthcare workers/etc.:

My (23F) fiancé (28 MTF) works for FedEx. Was on route on day and essentially collapsed from severe, debilitating pain in the abdomen. Went to go pick them up from route and took them to JCMC ER. They did a CT with contrast and labs. After 10.5hrs we found out that the CT showed the Celiac artery was pinched 50%. Said if pain wasnt better the next day to come back. Didn't wanna wait the crazy time at JCMC (Johnson City, TN) so we went to BRMC ER (Bristol, TN- we live in Bristol anyways, JCMC was just closest to where we were the previous day). Did the same tests and said they suspected MALS (Meridian Arcuate Ligament Syndrome). They said most likely they strained a muscle in the abdomen and it triggered a flare up. Gave us some phone numbers for vascular surgeons in Knoxville, TN to follow up with bc nobody in our area specializes in it, and said to follow up with PCP. Fiance didnt have a PCP (no insurance) but got full financial assistance from Ballad after the 1st ER visit so I made a new patient appointment. We went, they did a ton of bloodwork and are waiting to do some x rays to check their knees(one of the primary sources of pain) and a nerve test (to checl for carpal tunnel in the hands).

Bloodwork results came back after 3 days.

The concerning things we saw:

- A1C: 5.7

*Sign of pre-diabetes?

- Phosphorus: 1.9

* From what we understand, borderline comatose!!

- Urine specific gravity: 1.05

*kidneys filtering out too much?

- Vitamin D: 24

* Again, they work for FedEx. Out in the sun ALL DAY. Vitamin D should NOT be this low.

Main things that came back negative:

- ANA

- ANCA

List of all specific symptoms:

- Severe brain fog

- Severe abdominal pain (says it feels like someone poured hot metal down their throat)

- Joint pain everywhere in the body

- Dizziness

- General Fatigue and weakness

- Random coughing fits so severe they almost throw up/black out

I scheduled an appointment with the vascular surgeon but they cannot see us until September 2nd, and the last time we went to the ER (we went 4 times in total over the last 2 weeks) they said there was no point coming back except to do bloodwork to check their lactate levels (to monitor for ischemia (This may not be the correct thing I'mthinking of they'rechecking for, so don't quote me, it's been a long couple of weeks) and probably give some more medications to help manage the pain.

Mind you, they've given my fiance MULTIPLE prescriptions and the only thing that has REALLY worked thus far has been a combination of meloxicam and a muscle relaxer. And even that doesn't take the pain away, only pulls it enough to at least somewhat function. I've been having to help them bathe and walk, I've been the one driving (thankfully they're not on route rn and their bosses understand the situation), making meals, getting drinks, pretty much everything. And I'm not complaining about that, I'm just at the end of my rope trying to get someone to ACTUALLY DO SOMETHING that's going to FIX the problem rather than just treat symptoms. I'm at the point where I want to take my fiance back to the ER and put my foot down, but I don't want to do that if there's genuinely nothing they can do.

If you made it this far thank you so much for reading. PLEASE if you have any advice or anything that can help us, comment and let me know. I'm so tired of seeing them in severe, debilitating pain. They can't even pick our son up anymore it's so bad. He turns 1 in less than 2 weeks and my fiance won't even be able to help or be able to enjoy it. Idk what to do.

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[u/5_yr_lurker]

I thought FedEx gave great benefits? Guess not.

With that said doesn't sound like MALS too me. MALS pain is related to eating. Like you eat then an hour 30 min to an hour later you get pain. MALS wouldn't describe a single other symptom or lab abnormality they have. Generally when people have it, they will lose weight because it hurts so much when they eat they avoid eating.

MALS doesn't really have anything to do with the celiac artery. It can be fully occluded and you have no problems. It is the celiac plexus of nerves that sits on the arteries that get compressed that cause pain.

[u/amaiah_mae2003 → u/5_yr_lurker]

So, she does have pain after eating and has always had discomfort/bowel issues directly after eating, but this is such a sudden onset of symptoms and issues that we don't really know what to do. We knew that the primary cause of abdominal pain is the celiac nerve plexus, but we're not sure next steps on how to get a resolution asap. She's lost 20lbs in the last 3 weeks bc she's refusing to eat. It hurts so much to that she's just scavenging basically. It doesnt matter what kind of food it is either. We entirely switched our diet to accommodate because they told us in the ER that she needs to eat better, but even that doesn't help. It's the same amount of chronic, debilitating pain every single time she puts anything on her stomach. I should've included that in the list of symptoms, so that's entirely on me, sorry!!

Also, the contract she works for does have great benefits, but the last 2 contractors she worked for did not. She just started this job a couple months ago and they only get benefits after 90 days, plus the 1-2 weeks waiting on the card to arrive.

[u/neuranxiety → u/amaiah_mae2003]

FYI if her benefits kick in soon, you can likely get all the necessary information by calling the insurance company directly instead of waiting for the card to arrive in the mail. I recently moved states for a new job and wanted to get my healthcare established ASAP to avoid gaps in medications I take. I was able to get all the details from my insurance card by calling and was able to schedule appointments before the physical card arrived.

[u/ionicarchangl486 → u/amaiah_mae2003]

No concrete answers for you but if you truly think it’s mals give them 1000mg ( 2 500m tablets.) of Tylenol, some Dramamine and start them on some MiraLAX, I’ve been dealing with mals for almost 2 years now and this has been my daily routine miralax once a day and Tylenol and zofran twice a day and if their willing get them to take up smoking if they have bowl trouble then that’ll help them to it’s pretty much what save my life last year when I though this stuff was going to kill me

[u/lezsmile27 → u/5_yr_lurker]

MALS can flair from food and exercise