The man’s symptoms were mistaken for vitamin B deficiency and he was diagnosed with a rare disease that affects “3 in 1 million people.”
Martin Williams, 52, suddenly started losing function in his legs in February 2017 and was diagnosed with POEMS syndrome.
“I started to feel like my body was falling beneath me,” Williams explains. “It became difficult to walk and my toes became numb. Gradually I lost function.”
He went to see a doctor and was told he might have a vitamin B deficiency. But by March 2017, his condition worsened.
“I couldn’t walk more than a few hundred meters. My legs looked swollen. They had lost their definition,” he added.
“I did not recover and was hospitalized. I had to reduce my working hours and quit work completely in August 2017 because I could no longer function. I told my wife that I would no longer drive. I said, ‘It’s not safe.’ I was sitting at the dinner table and I said, ‘It’s happening to me.’
Mr Williams, who works at a supermarket in Newmarket, Suffolk, gradually lost control of his arms and hands and had to be fed by his wife Elena.
Doctors initially thought Williams might have Guillain-Barre syndrome, a rare condition that affects nerves. However, after two MRIs and blood tests, the father of two was diagnosed with POEMS syndrome in October 2017. POEMS syndrome is a rare type of plasma cell disease that can affect multiple systems in the body.
“Doctors discovered that the two tumors were actively producing harmful proteins that attacked my peripheral nervous system,” he says.
“The tumor was in two of my ribs and had to be removed. The diagnosis was a relief. They knew how to treat it. They told me the treatment would be five months of chemotherapy and a transplant. I was told, ‘I wanted them to take it.’ Keep it up.
“As someone who is independent and has traveled all over the world, having someone else eat and use the toilet was an absolute humiliation. My fear was that I would be dependent on 24/7 care for the rest of my life. did.”
After her diagnosis, Williams used a wheelchair and had to rely on 24-hour care. He had also dropped his weight from 15-10 pounds to 9-6 pounds due to the conditions.
“I lost control of my hands and arms. I couldn’t eat or defecate,” Williams said.
“It was a pretty dramatic deterioration. I needed 24/7 care. Every day I felt function leaving my body, to the point where I couldn’t even take a tissue out of a box. It was taken from me and I couldn’t get it back.”I don’t know how to get it back. ”
He was told that the disease caused his diaphragm to close, making him unable to breathe and potentially causing death.
“People thought they’d never see me again,” he added. “There was a time when I didn’t even know if I was going to survive.”
Doctors gave Martin five months of chemotherapy to kill the two tumors causing his problems, then performed a stem cell transplant to replace the damaged cells with healthy ones.
“What they did was miraculous. They took my healthy blood cells and used them to replace the damaged ones. It’s incredible,” Williams says.
“I was able to stand and walk for the first time in a while. In December, I drove an automatic car again.”
Williams is also able to work again.
“I’m doing things now that I wouldn’t have done otherwise, and I’m actually pretty good at it,” he added. “My condition will never go away, but it is treatable. I have blood tests every year. There is ongoing monitoring, but there is no treatment.
“I have ankle supports, so I can walk short distances, but not long distances. I also can’t run or play sports. It’s hard to lift heavy things, and I have to squat on the floor. But I will do what I can, and if I can’t, I don’t mind asking for help.
POEMS syndrome is rare and can affect multiple body systems. The main signs and symptoms of POEMS syndrome include nerve damage to peripheral nerves, enlarged organs, abnormal hormonal function, and skin changes such as hyperpigmentation (blackening of parts of the skin and nails) .
If you notice any of these symptoms, be sure to see your doctor.
Additional reporting by SWNS.
