How Often Do CT Scans Give False Negatives for MALS?

@ath
Welcome to Mayo Clinic Connect!
It certainly sounds like you checked off a lot of MALS boxes.
A regular CT scan might not pick up on the celiac artery stenosis.
The recommended testing is either a Duplex Ultrasound of the abdomen or a CT Angiogram.
We also always recommend that testing and medical evaluation be done at a University Medical Center.

Well, the good news is my CT scan was an angiogram with contrast, and it was also done by a university, but I guess that means it's pretty conclusive I don't have MALS then, huh? Could anything other disorder cause these symptoms, ruling out ones previous tests would've exposed?

Okay, I had a spigelian hernia, two years ago, almost, three weeks post surgery, three days of misery, went back to the surgeon, who denied that anything was wrong, went to emergency twice that same evening, and swear to god, something poked out of my tummy, and told them, and pushed it back in, went back, told them, "CT scan shows nothing, it's not possible"...long story short
six CTs, three endos, one gastric empty, one ultrasound, one barium swallow esophogram, one small bowel follow through, one colonscopy, 15 emergency dept docs, five surgeons, etc...most all denied, that what I felt there, a hernia, wasn't real, cause CT scans don't see a thing there...but a radiologist, and the medical journals, say that CT scans miss ventral hernias all the time, and radiologists, well it depends on who's reading the CT scan, miss it too...
walked into a surgeon a week ago, "you can feel something here, or I can, (and two massage therapists), it's poked out, I've pushed it in, I think it's a hernia...." sticks his fingers in, very few docs will do a physical exam, eyes and fingertips, "it's very rare, you have a spigelian hernia" no, really!? six CT scans show nothing, and I do?

I had two incisional hernias. Had surgery last June for one hernia. Two were there.

@ath
I admit- I’m surprised.
The CTA should have shown it. Of course you can also ask for a Duplex ultrasound.
There has to be a reason for your pain and weight loss.
Have you been tested for celiac disease?
Don’t give up. With your symptoms and weight loss there has to be a cause.

Yeah, that's why I started looking towards Mayo Clinic connect was to see if there was anything I was overlooking.
I don't have celiac disease either.
I hope I can find it soon. My car sickness combines with this in a bad way where it takes days for me to recover from any form of traveling, which makes testing cost me about half a pound per trip. I can only do that a handful of times before I drop below 90 pounds.

@ath- You definitely cannot afford to lose more weight!
How old are you?
Can you take something for your car sickness?
What does your gastroenterologist say at this point?
Did you have pain doing the gastric emptying test and colonoscopy prep?
I can’t think of anything else- except a Duplex ultrasound to again observe how the blood vessels in your abdomen work.
There is always the recommendation to get a second opinion, including Mayo Clinic.

I'm 24 and 5'5"
Most remedies for car sickness have proven to have little effect (pressure points, tums, ginger water tablets and products, being the driver, and bicarbonate of soda if I remember the name right). Dramamine is best at the price of drowsiness, but sometimes isn't strong enough to overcome the nausea. However, that was before this started, and I don't think I can risk experimenting with the car. For what it's worth, I was diagnosed with enlarged vestibules (not aquaducts thankfully), enlarged lateral semicircular canals, and vestibular dysplasia. I don't really know what that all means, but it's the only diagnosis I was given by my ENT and to my knowledge it doesn't have a conventional name either.

My GI doctor recommends tertiary care from here, although my local university decided scheduling me 6 months out was a reasonable thing to, and did not adhere to his nor my requests of such care, so I've asked him to instead recommend me to Mayo Clinic for tertiary care instead, though traveling that far will be so difficult for me, I'd have to know I could stay long-term. Hopefully if I get a call, I can ask a Mayo GI about a duplex ultrasound.
The gastric emptying test didn't hurt any more than eating usually causes me. Colonoscopy prep was a nightmare for me though. It wasn't physically painful outside of when I was throwing up the solution at least.

@ath
I’m sorry to hear about your inner ear problems. Is there anything special to make it more tolerable?
Your GI doctor is right to refer you to a tertiary care hospital. 6 months is a long time.
Go ahead and ask your GI doctor to refer you to Mayo Clinic. If they accept you they will do whatever testing is necessary- you don’t have to ask for it. I went there for GI problems and they were extremely thorough and well organized.
If they don’t have openings you can also try Cleveland Clinic.
Let me know what you are going to do, will you?

Well, unfortunately I just got a letter in the mail saying Mayo Clinic has denied my request. I guess I'll have to try Cleveland Clinic then?