When it comes to illness, trust your doctor not the internet
Milton Darrell found out he had multiple sclerosis and went to Google to learn more.
Then 31, everything that he read terrified him: a degenerative autoimmune disease, MS attacks the nerves in the brain and spinal cord and, in some people, causes mobility issues, fatigue, cramps, numbness, pain and muscle stiffness.
MS is a lifelong condition but people don’t usually die from it.
It is not contagious or infectious.
No two people, even if they are closely related, will have the same type of symptoms.
There is no cure for MS but there are lots of ways to manage symptoms. For many people, there are also drugs that can slow it down.
The cause of MS is unknown.
Twenty-two years later, his advice is to take whatever you find on the internet with a grain of salt.
“Get as much information as you can, but don’t take everything you find on the internet seriously,” said Mr Darrell, who shared his experience as part of MS Awareness Month. “Usually, what you read on the internet is the worst-case scenario.”
The reality for him was that he was able to do the things he loved for a long time. He walked on the beach. He swam. He rode a pedal bike and a scooter.
It is only recently that his mobility has started to degenerate. Because his balance became too unpredictable he walks with a cane and had to give up riding. It is possible he might one day have to switch to a walker.
He first noticed something was off in 1996. His leg went numb as he started to fall asleep; the feeling didn’t return by the next morning.
“A few days later it was still numb. Then my left hand started to go numb.”
His doctor performed a spinal tap that indicated MS was possible. At Massachusetts General Hospital in Boston the results of an MRI were inconclusive.
“I was like, ‘Oh, I don’t have it,’” he said. “I was happy-go-lucky.”
A year-and-a-half later a work colleague noticed he was wobbling as he walked and jokingly asked if he had been drinking.
Mr Darrell hadn’t noticed a thing but, while on holiday, decided to see his neurologist in Boston just in case. The specialist confirmed he indeed had MS and put him on a week-long intravenous steroid treatment.
“I was by myself and a bit upset,” Mr Darrell said. “I thought, life is not supposed to be like this.”
There is no cure for MS but doctors can prescribe corticosteroids to reduce nerve inflammation. Mr Darrell resisted taking medication for a few years. His advice to young people newly diagnosed: do what your doctor tells you to do.
“I think that made things progress faster,” he said. “Although I can’t really be sure of that.”
He considers himself lucky that the disease impacted only the left side of his body.
“I can still drive because I can use my right foot,” he said. “I know other people who haven’t been so lucky.”
The degenerative nature of the disease can get sufferers down sometimes, Mr Darrell said. He gets a huge boost from being a part of the Multiple Sclerosis Society of Bermuda which allows people to exchange information, offer emotional support and share a laugh.
The Society also helps with members' medical bills as well as the cost of home care and equipment.
“In 2002 I was working at WindReach, doing some bookkeeping on a part-time basis,” he said. “The accountant that was doing the books said her mother had MS. She was a member of the MS Society at that time. She said, ‘Why don’t you come to a meeting with me?’”
He has been a member ever since, and has been president several times. He is currently co-president with Ellen Jane Hollis.
“It is good to be around people that are going through similar issues that you may be going through,” Mr Darrell said. “When you are sitting there on your own you feel like you are special. It is good to have camaraderie, I guess.”
MS is three times more common among females than males. There are about 30 members in the Bermuda society although he believes there are many more people with MS here. Despite attempts the group has been unsuccessful in getting numbers from government.
Like a lot of people, the pandemic has caused him to feel bored and anxious.
“Not a lot is known yet about the impact of Covid-19 on people with MS,” Mr Darrell said.
“To be on the safe side my doctor recommended I have [the vaccine]. So I had it.”
For more information about the MS Society of Bermuda: 293-0772; firstname.lastname@example.org