“I thought I had a vitamin B deficiency, but it was actually a three-in-a-million disease.”

The father, who thought his symptoms were simply due to a vitamin B deficiency, was diagnosed with a disease that affects “3 in a million people.”

Martin Williams, 52, lost 40 kilograms, began to lose function in his legs and gradually began to lose control of his arms and hands. His symptoms were so severe that his wife Elena, 44, had to feed him.

Initially, doctors thought Martin had either a common vitamin B deficiency or Guillian-Barré syndrome, a rare and serious condition that affects the nerves. But after two MRIs, a PET scan and numerous blood tests, the father-of-two was diagnosed with POEMS syndrome, an incredibly rare plasma cell disease.

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Alongside the stem cell transplant, doctors gave Martin five months of chemotherapy aimed at killing the two tumors causing his symptoms. Fortunately, he is now able to stand and walk for the first time and is back to work.

Martin, who works at a supermarket in Newmarket, Suffolk, said: “I lost control of my hands and arms. I couldn’t eat or defecate. It was quite a dramatic deterioration. I needed 24/7 care. I did,” he said.

“Every day I felt my body’s functions disappearing. It was to the point where I couldn’t even reach for a box of tissues. My functions were taken away from me and I didn’t know how to get them back. What they did was a miracle. They took my healthy blood cells and used them to replace the damaged ones. It’s incredible.

“I was able to stand and walk for the first time in a while, and in December I drove an automatic again.” Martin first noticed something was wrong in February 2017.

He said: “I felt like my body was falling down, I had difficulty walking, and my toes became numb. Gradually, I lost function.

“He couldn’t walk more than a few hundred meters. His legs looked swollen. He was losing feeling in them.” Despite the tests, doctors were unsure what was wrong with Martin. could not be determined.

He added, “He did not recover and was hospitalized.” I cut back on my hours and had to quit my job completely in August 2017 because I was no longer able to function. I told her wife it wasn’t safe to drive the car anymore. I was sitting at the dinner table and I said, ‘This is happening to my hands.’ ”

“Doctors discovered two tumors that were actively producing harmful proteins that attacked my peripheral nervous system. The tumors were in two of my ribs. I had to have them removed. The diagnosis was a relief. They knew the cure. I was told the treatment would be five months of chemotherapy and a transplant.

“I wanted them to get over it. As someone who is independent and has traveled all over the world, it was just humiliating to have someone else eat and use the toilet. Martin received the transplant in April 2018.

“Before the transplant, I told my friend, ‘If I don’t make it out alive, please take care of my wife and children.’ My two girls were my biggest worry. My youngest I was 2 years old at the time, and there was a time when I didn’t know if I would ever see her grow beyond 2 years old. ”

Fortunately, Martin is now recovering and was able to return to work in January 2019. “I’m doing things now that I wouldn’t have done otherwise, and I’m actually pretty good at it. My condition never gets better,” she said. It is curable, but it is treatable. I get blood tests every year, but there is no cure.

“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. I probably only have 20% of my original strength left in my legs. I’m planning on traveling in the summer and will have to use a mobility scooter for day trips.

“Walking up a hill is difficult, but if I can, I’ll do it, and if I can’t, I don’t mind asking for help.”

What is POEM syndrome?

According to cancer charity Myeloma UK, POEMS syndrome is a rare type of plasma cell disorder that can affect multiple systems in the body. The syndrome is named after his five characteristics common to this syndrome.

• polyneuropathy – nerve damage

• organomegaly – Enlargement of some organs

• endocrine disorders – Abnormal functioning of endocrine glands

• Monoclonal plasma cell disorder – such as myeloma and other plasma cell diseases

• Skin changes – hyperpigmentation etc.

Treatment for POEMS may include chemotherapy and/or radiation therapy.