Man diagnosed with rare syndrome after symptoms mistaken for a vitamin B deficiency

A man was diagnosed with a rare ‘three in one million’ disease after his symptoms were mistaken for a vitamin B deficiency.

Martin Williams, 52, was found to have POEMS syndrome after he suddenly started to lose function in his legs in February 2017.

"I started to feel like my body was falling under me," Williams explains. "I had problems walking. My toes went numb. I gradually lost function."

He went to the doctors who suggested he might have a vitamin B deficiency. But by March 2017, his condition had worsened.

"I couldn’t walk a few hundred yards. My legs seemed puffy. I was losing definition in my legs," he adds.

"I didn’t recover and I was admitted to hospital. I cut my hours down and had to stop working entirely in August 2017 because I couldn’t function. I told my wife I was no longer safe to drive our car. I was sat at the dinner table and I said, 'it's happening to my hands'."

Williams, a supermarket worker from Newmarket, Suffolk, gradually lost the ability to control his arms and hands, and had to be fed by his wife Elena.

Doctors initially thought that Williams could have Guillain-Barré syndrome, which is a rare condition that affects the nerves. However, two MRIs and blood tests later, the father-of-two was diagnosed with POEMS syndrome in October 2017, which is a rare type of plasma cell disorder that can affect multiple systems in the body.

"The doctors found two tumours actively producing a harmful protein that was attacking my peripheral nervous system," he says.

"The tumours were in two of my ribs. I had to get them removed. The diagnosis was a relief. They knew how to treat it. I was told the treatment would be five months of chemotherapy and a transplant. I wanted them to get on with it.

"As someone who's independent, who's been around the world, being fed and toileted by others was just humiliating. My terror was being reliant on 24/7 care for the rest of my life."

Following his diagnosis, Williams had to use a wheelchair and rely on round-the-clock care. He had also dropped from 15st 10lb to 9st 6lb due to the condition.

"I lost the ability to control my hands and arms. I couldn’t feed or relieve myself," Williams says.

"It was quite a dramatic decline. I needed 24/7 care. Each day I felt function leaving my body, to the point where I couldn't take a tissue out of a box. My function was taken away from me and I didn't know how to get it back.”

He was told the disease might shut down his diaphragm and kill him by making it impossible for him to breathe.

"People thought they’d never see me again," he adds. "There was a point where I didn’t know if I was gonna survive or not."

Doctors treated Martin with five months of chemotherapy to kill the two tumours causing the problems, followed by a stem cell transplant, which replaced his damaged cells with healthy ones.

"It's miraculous what they did. They took my healthy blood cells and used them to replace the damaged ones. It's incredible," Williams says.

"I managed to stand and walk for the first time in ages. In December I drove again using an automatic car."

Williams is now able to work again too.

"I’m doing something now I wouldn’t have done otherwise — and I’m actually quite good at it," he adds. "My condition will never go away but it can be treated. I have annual blood tests. There's ongoing monitoring, but no medical treatment.

"I use ankle support, so I can walk short distances but not go on long walks. I also can't run or do sporting activities. It's difficult for me to lift heavy things up and I can't crouch down on the floor. But if I can do something I'll do it, if I can't, I don't mind asking for help."

POEMS syndrome is rare and can affect multiple body systems. Some of the main signs and symptoms of POEMS syndrome include nerve damage to peripheral nerves, enlargement of organs, abnormal hormone function, and changes in skin such as hyperpigmentation – darkening of an area of the skin or nails.

If you notice any of these symptoms, be sure to visit your GP.

Additional reporting by SWNS.

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