Woman in pain every time she ate Facebook stranger’s diagnosis

A woman with a debilitating illness 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, when she felt pain from food poisoning every time she ate.

And, after seeing several specialists, she was diagnosed with gastroparesis in March 2021. But none of the drugs or treatments she was given helped relieve symptoms—and she even had to go on a liquid diet.

It was only after a woman reached out to her to express her dismay in a Facebook group for gastroparesis sufferers and suggested that she look at Median Arcuate Ligament Syndrome, or MALS for short. Annie said: “A stomach empties itself in half an hour, but for me, after four hours, it was zero percent empty.

“I didn’t know what to do and was feeling really low in myself – I had pretty much given up and left the Gastroparesis Facebook group about what had happened. I had a woman from America There was a message from someone who said she has been a nurse for twenty years and should see me at MALS.

“She had done it herself and worked with MALS surgeons—so it was like luck.”

Following her experience of food poisoning in March 2020, Annie, a broker, went to her GP, who she says simply told her it was a stomach bug that she would be fine with. Every time she ate she began to experience pain that increased until she could not even eat a mouthful or two – as the pain left her in bed all day.

The pain continued to grow over the ensuing months and she began visiting doctors and trying to get to the bottom of the mysterious illness, even undergoing an MRI that didn’t bring her any closer to finding the problem. A doctor even told her that she thought she was anorexic and that there was nothing physically wrong with her, adding that he couldn’t give her the help she needed – and even her parents also believed in him.

However, he eventually began to see that there was no way to manipulate the symptoms he was experiencing and began seeing specialists to diagnose the problem. She was eventually given a diagnosis of gastroparesis in March 2021 after a series of tests and courses of antibiotics – and by this time she was living on a completely liquid diet and had lost more than two stones.

She began treatment for gastroparesis, including Botox injections into her abdomen, however none of the measures helped and she continued to suffer from chronic pain. In desperation, Annie and her family reached out to a Texas-based doctor, who told her that if he passed out as soon as possible, he would operate on her to try to relieve her symptoms.

She underwent keyhole surgery, despite not knowing if it would work for two months after the procedure – and, heartbreakingly, that she was still experiencing severe symptoms after the recovery period. Frustrated, she expressed her feelings in a post on the Gastroparesis Facebook group — and unexpectedly a stranger approached her and suggested that she look into MALS disease.

After doing some research she realized how similar her symptoms were and managed to find a doctor in London who could treat the disease. After an ultrasound scan, she finally found the diagnosis she was looking for – she had median arcuate ligament syndrome.

Now, Annie is waiting to be seen by a world-leading MALS specialist in Connecticut and hopes to eventually undergo life-changing surgery this year. Annie said, “Every time I ate, I was in severe pain, to such an extent that the double-faced meal made me so sick that I stayed in bed for the rest of the day.”

“It escalated over a few months so I started seeing some doctors – one did an MRI that came out fine and he said he thought I was anorexic, although I told him ‘no, there is something physically wrong with me’ ‘.

“He told me he couldn’t help me anymore and at first even my parents believed him, they trusted him because he was a doctor, but after a while they couldn’t. There was no way to create these symptoms, I couldn’t physically do them.

“I saw a doctor who promised me he would get to the bottom of it and did a lot of tests on me – I was on a lot of antibiotics during this time because he thought it was a bacterial infection. In March 2021 he told me that They thought it was gastroparesis – by this time I was on a liquid diet because it was too much to eat and I had a job so I couldn’t be sick all the time.

“It’s like your stomach is paralyzed, the doctor said it was the worst he had ever seen and couldn’t believe no one had tested me. It was good to get diagnosed and to know I wasn’t crazy. I went on all the meds for gastroparesis and even put botox injections in my stomach but nothing helped.

“I got in touch with the doctor in Texas who pioneered bariatric and gastric sleeve surgery – we were pretty desperate at the moment. I had lost two stones and wasn’t that big at the beginning so I was underweight at the moment and I was losing weight every week.

“I went to Mexico with my mother and then 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 surgery and I was on a liquid and puree diet for six weeks after surgery. The doctor said that after two months I should be on solids but I was barely liquid. Was tolerating the substance. Couldn’t put down much anymore.

“He was confused because everyone who had surgery had such success, physically my gastric emptied but all my symptoms were still there. I entered the Gastroparesis Facebook group and got a message from a woman in the US Who said I should look at MALS – Median Arcuate Ligament Syndrome.

“My sister and I did a little research about it and actually looked like me which was an optimistic sign, as gastroparesis is sometimes found secondary to MALS and we were never told the cause, It came out of nowhere. I did an ultrasound with a doctor in London who came back positive for MALS and then did another diagnostic test where he injected steroids into a bundle of nerves after a few scans.

“They have to be completely and everything else out because it is so rare. For eight hours after the steroid injection I ate completely normally and no symptoms – in my head I didn’t understand that. How can I eat all of a sudden but it was quite a good sign that it can 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 me all my scans – I was put on a waiting list for surgery which is expected in July.”

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