‘Nobody would believe me – they said kids can’t get MS. I had to really fight and fight’
SANDRA BLYTH knew something was seriously wrong with her son, but she had a hard time convincing doctors.
The problems began in early 2009 when Sam, then five, struggled to shake off a cold and began suffering excruciating headaches and eye pain.
Ms Blyth, 47, from Dumfries, said: “I kept going back to the GP saying ‘these headaches are getting worse’, but they just said it’s an inner ear infection, it’s a virus, they were telling me at five years old that he was stressed, which is just ridiculous. It just went on and on.
“He had headaches every day - night and day. He would wake
pick up might not look like classic MS in an adult. It’s a very specialised area. It’s very difficult to make a clear diagnosis.”
He added that,
while
the up screaming in the night with eye pain and headache pain, and vomiting all the time. He was in Primary 1 and I would send him to school but then he would get sent home because he was screaming in class. I’d just had enough, so I took him to my GP and said ‘look I think he’s got a brain tumour’.
“They just laughed. They sent me away to get his eyes tested and told me to stop giving him chocolate for 10 days. I went home but a couple of hours later he started screaming that he couldn’t see so I just took him to A&E.”
Sam finally underwent blood tests and a CT scan in March 2009, which identified a mass that doctors initially believed to be a terminal brain tumour.
biomarker research in childhood MS is “still in its infancy”, it could simplify diagnosis.
Imogen Scott Plummer, of the MS Society, said: “MS can be a Following an MRI and lumbar puncture in Edinburgh, however, doctors diagnosed ADEM - a completely curable inflammation of the brain and spinal cord.
Sam underwent 10 days of intravenous steroids and initially appeared to improve.
“We came home thinking ‘this is brilliant’, because we thought we were going to lose him but now we were being told he was going to be fine,” said Ms Blyth, who also has a 15-year-old daughter with her partner Ian.
“Within a couple of days of being home, though, he started to get really sick again. Everything started up and he went downhill. From then, all that summer, I was back and forth with Sam to Edinburgh trying to get them to believe he had MS. Nobody
really unpredictable condition to live with and symptoms can have a huge impact on a young person’s life, making things like school and studying even more challenging would believe me - they said kids can’t get MS. I had to really fight and fight, even with my family. Everyone thought I was crazy. The doctors wanted me to see a psychologist, my GP said I was neurotic, but finally they did give him an MRI at the start of August and he was diagnosed with MS.”
Since then Sam, now 13, has been on drugs for relapsingremitting MS that allow him to live a normal life.
He said: “People are quite surprised when I tell them [I have MS] because it doesn’t really affect me on a daily basis. A bad day would be if I had a really sore head and eyes and if my legs felt tingly, but that doesn’t happen very often. It maybe happens about once a year since I’ve started treatment.”
than normal. It’s vital we continue to fund research so children and young people living with MS, and their families, get the very best care.”