A woman who suffers from a debilitating disease says she was finally diagnosed after a year of confusion – when a stranger reached out to her on Facebook. Annie Marshall, 20, first began experiencing symptoms in March 2020 after a bout of food poisoning left her in pain every time she ate.
And, after seeing a number of specialists, she was diagnosed with gastroparesis in March 2021. But none of the medications or treatments she was given helped relieve the symptoms – and she even had to go on a liquid diet.
It was only after she vented her frustrations in a Facebook group for gastroparesis sufferers that a woman reached out to her and suggested she looks into Median Arcuate Ligament Syndrome, or MALS for short. Annie said: “A stomach is supposed to empty itself in half an hour but for me, after four hours, zero percent had emptied.
“I didn’t know what to do and was feeling really low in myself – I had pretty much given up and vented to a gastroparesis Facebook group about everything that had happened. I had a message from a woman in America who said she had been a nurse for twenty years and I should look into MALS.
“She had it herself and had worked with MALS surgeons – so it was sort of like luck.”
Following her experience with food poisoning in March 2020, Annie, a broker, went to her GP, who she says simply told her it was a stomach bug she would recover from. She began experiencing pain every time she ate which increased until she was unable to eat even a couple of mouthfuls of food – as the pain would leave her bedridden for the rest of the day.
The pain continued to increase over the coming months and she began visiting doctors to try and get to the bottom of the mystery illness, even undergoing an MRI which bought her no closer to discovering the problem.One doctor even told her he thought she was anorexic and there was nothing physically wrong with her, saying he couldn’t give her the help she needed – and even her parents believed him.
However, they eventually began to see that there was no way she could manipulate the symptoms she was experiencing and she began to see specialists to try and diagnose the problem. She was eventually given a diagnosis of gastroparesis in March 2021 following a series of tests and courses of antibiotics – and by this time was living on an entirely liquid diet and had lost over two stone.
She began treatment for gastroparesis, including having Botox injected into her stomach, however none of the remedies helped and she continued to suffer with chronic pain. In desperation, Annie and her family reached out to a doctor based in Texas who told her that if she flew out as soon as she could he would operate on her to try and relieve her symptoms.
She underwent keyhole surgery despite not knowing if it would work until two months after the procedure – and heartbreakingly, after the recovery period she was still experiencing severe symptoms. Frustrated, she vented her feelings in a post on a gastroparesis Facebook group – and unexpectedly a stranger reached out to her and suggested she look into MALS disease.
After doing some research she realised how similar the symptoms were to her own and managed to find a doctor in London who could treat the disease. Following an ultrasound scan, she finally got the diagnosis she had been looking for – she had Median Arcuate Ligament Syndrome.
Now, Annie is waiting to be seen by a world-leading MALS specialist in Connecticut and is hoping to finally undergo life-changing surgery this year. “I was in lots of pain every time I ate which increased to the point where two mouthfuls of food would make me so ill that I would be in bed for the rest of the day,” said Annie.
“It increased over a couple of months so I started seeing a few doctors – one did an MRI which came back fine and he said he thought I was anorexic even though I told him ‘no, there’s something physically wrong with me’.
“He told me he couldn’t help me anymore and at first my parents believed him too, they trusted him because he was a doctor, but after a while they could it wasn’t me doing it to myself. There was no way I could make these symptoms, I couldn’t physically make them happen.
“I saw a doctor who promised me he would get to the bottom of it and did quite a few tests on me – I was on a lot of antibiotics during this time as they thought it was a bacterial infection. In March 2021 he told me he thought it was gastroparesis – by this time I was on a liquid diet as it was too much to eat and I had a job so I couldn’t be ill all the time.
“It’s like your stomach is paralysed, the doctor said it was the worst he’d ever seen it and couldn’t believe no one had tested me sooner. It was nice to have a diagnosis and know I wasn’t crazy. I went on all the meds for gastroparesis and even had Botox injected into my stomach but nothing helped.
“I got in touch with the doctor in Texas who had pioneered bariatric and gastric sleeve surgery – we were quite desperate at this point. I’d lost two stone and wasn’t that big to begin with so I was quite underweight at this point and my weight loss was continuing every week.
“I flew out to Mexico with my mum and then went over to Texas where I had keyhole surgery and flew home a few days later.
“We didn’t know how effective it would be until two months after the surgery and I was on a liquid and purees diet for six weeks following the surgery. The doctor said after two months I should be on solids but I was barely tolerating liquids and couldn’t keep much down.
“He was confused as everyone else who had the surgery had so much success, physically my gastric emptying had sped up but all my symptoms were still there. I vented in a gastroparesis Facebook group and had a message from a woman in America who said I should look into MALS – Median Arcuate Ligament Syndrome.
“Me and my sister researched a little bit about it and seemed really similar to me which was a hopeful sign, as gastroparesis is sometimes found secondary to MALS and we’d never been told a cause for it, it just came from nowhere. I did an ultrasound with a doctor in London which came back positive for MALS and then had another diagnostic test done where they inject a steroid into a bundle of nerves after quite a few scans.
“They have to be quite thorough and have to exclude everything else as it is so rare. For eight hours after the steroid injection I ate perfectly normally and no symptoms – in my head I couldn’t understand how I could suddenly eat but it was quite a good indication that this could be resolved with surgery.
“I got in touch with the best MALS surgeon in the world who is based in Connecticut and had to send over all my scans – I was put on the waiting list for surgery which will hopefully happen in July.”