Woman, 20, suffering with mystery disease diagnosed after stranger reached out on Facebook

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Annie Marshall, 20, began experiencing symptoms in March 2020 after a bout of food poisoning left her in pain every time she ate. After seeing a number of specialists, she was diagnosed with gastroparesis a year later in March 2021. But despite being given a number of medications and treatments, Annie claims she was still suffering from symptoms, leaving her with no choice but to go on a liquid diet. After venting her frustrations in a Facebook group for gastroparesis sufferers, a woman reached out and suggested she look into Median Arcuate Ligament Syndrome, or MALS for short.

Annie, from Epping Forest, Essex, 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.”

In March 2020, Annie, a broker, made her first visit to the GP regarding her symptoms where she claims to have been told it was a stomach bug.

But with the pain becoming unbearable, she returned demanding answers after struggling to eat food.

As the pain continued, she claims to have made several visits to the GP, with her undergoing an MRI on one occasion, to no avail.

Annie claimed one doctor suggested she was suffering from anorexia after being unable to find physical symptoms.

But she was eventually sent to specialists who investigated her symptoms further, which resulted in her first diagnosis in March 2021 of gastroparesis.

She said: “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 puree 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.”

Despite undergoing treatment, the chronic pain continued until one eagle-eyed Facebook user suggested she may have MALS disease.

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She said: “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.

“My sister and I researched a little bit about it and it 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.”

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