A woman suffering from a debilitating illness says she was finally diagnosed after a year of confusion – when a stranger contacted her on Facebook. Annie Marshall, 20, began showing symptoms for the first time in March 2020 after a period of food poisoning that left her in pain every time she ate.
And, after visiting several specialists, she was diagnosed with gastroparesis in March 2021. But none of the drugs or treatments given to her helped to alleviate the symptoms – and she even had to go on a liquid diet.
Only after expressing her frustration to a Facebook group about people suffering from gastroparesis did a woman contact her and suggest that she be examined for Medium Toxic Syndrome, or MALS for short. Annie said: “A stomach is supposed to empty in half an hour, but for me, after four hours, zero percent was empty.
“I did not know what to do and I felt very low in myself – I had almost given up and talked to a Facebook group about gastropods 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 for MALS.
“She had it herself and worked with MALS surgeons – so it was like luck.”
After her experience with food poisoning in March 2020, Annie, a realtor, went to her doctor, who says she just told her it was a stomach bug from which she will recover. She began to feel pain every time she ate which increased until she could not eat even a couple of bites of food – as the pain would leave her bed for the rest of the day.
The pain continued to increase in the following months and she began visiting doctors to try to diagnose the mysterious disease, even undergoing an MRI scan which led her to discover the problem. One doctor even told her that he thought she was anorexic and had nothing wrong with her physically, saying he could not give her the help she needed – and even her parents believed him.
However, they eventually began to see that there was no way he could handle the symptoms he was experiencing and he began seeing specialists to try to diagnose the problem. She was finally diagnosed with gastroparesis in March 2021 after a series of antibiotic tests and courses – and at the time was living on a completely wet diet and had lost more than two stones.
She started treatment for gastroparesis, including a Botox injection in her stomach, but none of the treatments helped and she continued to suffer from chronic pain. In desperation, Annie and her family contacted a Texas-based doctor, who told her that if she was thrown out as soon as possible, she would operate on her to try to alleviate her symptoms.
He underwent keyhole surgery, although he did not know if it would work until two months after the procedure – and it was heartbreaking, after the recovery period, he was still experiencing severe symptoms. Disappointed, she expressed her feelings in a post on a Facebook group about gastroparesis – and unexpectedly a stranger approached her and suggested she be tested for MALS.
After doing some research, she realized how similar the symptoms were to hers and managed to find a doctor in London who could treat the disease. After an ultrasound, he finally got the diagnosis he was looking for – he had Medium Toxic Syndrome.
Now, Annie is waiting to be seen by a leading MALS specialist in Connecticut and hopes to finally undergo life-changing surgery this year. “I was in a lot of pain every time I ate, which grew to the point where two bites of food would make me so sick that I would be in bed for the rest of the day,” said Annie.
“It grew in a few months and I started seeing some doctors – one did an MRI which came back fine and he said he thought I was anorexic, even though I told him ‘no, there is something physically wrong with me’.
“He told me that he could not help me anymore and at first my parents believed in him, they trusted him because he was a doctor, but after a while they might not do it to me. There was no way I could do these symptoms, I could not do them naturally.
“I saw a doctor who promised me he would do it and he did a lot of tests for me – I was taking a lot of antibiotics during this period as they thought it was a bacterial infection. In March 2021 he told me that he thought it was gastroparesis – at that time I was dieting in liquid form, as it was too much to eat and I had a job, so I could not be sick all the time.
“It’s like your stomach is paralyzed, the doctor said it was the worst he had ever seen and he could not believe that no one had tested me earlier. It was nice to have a diagnosis and know I was not crazy. I took all the medicines for gastroparesis and even injected Botox in my stomach, but nothing helped.
“I got in touch with the doctor in Texas who had pioneered bariatric and gastric surgery – we were quite desperate at this point. I had lost two stones and it was not that big at first, so I was quite underweight at this point and my weight loss continued every week.
“I flew out to Mexico with my mom and then went to Texas where I had a keyhole operation and flew home a few days later.
“We did not know how effective it would be until two months after surgery and I was on a fluid and puree diet for six weeks after surgery. The doctor said after two months I should take solids but I could hardly tolerate fluids and could not keep a lot.
“He was confused as everyone else who had the surgery was so successful, physically my gastric emptying had accelerated, but all my symptoms were still there. I joined a Facebook group about gastroparesis and had a message from a woman in America who said I should look into MALS – Medium Toxic Syndrome.
“My sister and I searched a bit for it and it seemed very similar to what was a promising sign, as gastroparesis is sometimes found secondary to MALS and we were never told the cause, it just came out of nowhere. I did an ultrasound with a doctor in London who was positive for MALS and then did another diagnostic test where they injected a steroid into a bundle of nerves after several scans.
“They have to be quite careful and they have to rule out anything else, as it is so rare. For eight hours after the steroid injection I ate perfectly normally and without symptoms – in my head I could not figure out how I could eat suddenly, but it was a very good indication that this could be resolved with surgery.
“I got in touch with the best MALS surgeon in the Connecticut-based world and had to send all my scans – I was on the waiting list for surgery, which we hope will be in July.”