Woman told she had anxiety diagnosed with rare brain condition

A woman who was told she had anxiety was later diagnosed with Autoimmune Basal Ganglia Encephalitis, a rare brain condition.

When Evie Meg, 23, was a teenager, she began to suffer bouts of panic and psychosis, and was diagnosed with anxiety disorder by doctors.

Meg began experiencing seizures when she was 17, along with temporary limb paralysis that left her unable to walk for a month, but was still told that it was due to anxiety.

Frustrated with the diagnosis, the then-teenager began sharing her symptoms and experiences on TikTok, where she was reached out to by a concerned follower.

"I posted a video of me walking across my kitchen without crutches, just taking a few steps," Meg explains. "That video went viral and the support from it was amazing. People were saying how proud they were that I’d learnt to walk again. It just went from there, really.

"In 2021, I started getting loads of messages from this girl who had been commenting on all of my TikTok videos, saying I should look into this condition. She had it and she was so convinced that I had it."

Because of this interaction, Meg booked in to see a specialist who diagnosed her with the brain inflammation disorder.

"When I got the diagnosis, we’d had to go private to find a specialist," Meg says. "The NHS just don’t know what to do with me, because it’s such a complex and unusual condition.

"I have daily seizure activity. I have really severe pain above my right eye, and I haven’t been able to walk properly since May 2023. I get a lot of tiredness. It affects my mood quite a lot as well, I can get really upset or angry for no reason."

Meg says she was put on antibiotics and steroids upon diagnosis, which stopped her seizures.

"It was crazy how quickly things turned around. I couldn’t believe it," she adds. "We stayed with the doctors in London for a while, but I started becoming resistant to the antibiotics.

"Because my condition was not diagnosed for such a long time, it was allowed to progress and get a lot worse. It means it’s much more difficult to treat now, so we had to look for more intense options."

Meg adds that her mum began researching the infusions that she needed and found a clinic in Poland that offered them – but at at £20,000 price tag.

"Last year, when I went to Poland for tests, they found loads of other infections in my blood, which could be causing the brain inflammation," she adds.

"The SOT I had in January was to treat one of the infections, but we’re very early days – we’ve got to treat each one individually. Because they found so many, they have to do it multiple times to treat each infection. The next year or so for me is looking like a lot more SOT infusions – but I’m taking it one day at a time."

Meg and her family have begun a fundraising campaign to help her have the treatment she needs, and have raised over £16,000 so far.

"The support has been pretty insane," she says. "We had a local fundraiser in a church hall, and we raised over £4,000 just doing tombolas and raffles in that one afternoon.

"It’s been incredible – very overwhelming but in the best way. I became a lot more passionate about raising awareness when I got my correct diagnosis, because it just showed how it can be missed so easily. I really want people to know that and see that so that other people don’t go through what I did."

Autoimmune Basal Ganglia Encephalitis is estimated to affect just 1.5 in every 100,000 people in England, and is characterised by the rapid development of akinesia, rigidity, and tremors.

It is a form of Encephalitis, which the NHS says is "an uncommon but serious condition in which the brain becomes inflamed". The very young and the very old are the age groups most at risk.

Some symptoms of Encephalitis include seizures and fits, confusion, disorientation, changes in personality or behaviour, difficulty speaking, and weakness or loss of movement in parts of the body.

It adds that causes are not always clear but, rarely, it can be caused by common viruses such as herpes simplex (cold sores), or chickenpox spreading to the brain; a problem with the immune system; or bacterial or fungal infections.

It is possible for some people to make a full recovery from Encephalitis, but the NHS says this can be a 'long and frustrating' process.

Additional reporting by SWNS.

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