Doctors said my seizures and paralysis were from anxiety — but I found out I had a rare brain condition

A woman said doctors told her she just had anxiety — but she actually has a debilitating brain condition. 

Evie Meg, 23, from England, suffers from Tourette’s syndrome, seizures and autoimmune basal and ganglia encephalitis, which is a severe form of brain inflammation, South West News Service reported.

Now she is raising money to help fund her treatment.

Meg posts about her health woes on her TikTok, where she goes by @thistrippyhippie and where she’s accumulated 16 million followers. She first started posting on the platform because her puzzling symptoms were worrisome, and she thought talking about it would give her some relief.

In 2021, one of her followers, who has encephalitis, messaged Meg to tell her she thought she may have the same thing. It turns out her follower was correct and she got a diagnosis — but it was a long road before she got any relief.

Meg said she started developing symptoms when she was in her early teens. 

“When I was 14, I suddenly became anxious and developed a phobia of school,” Meg explained. 

“I started hiding in the library, and I wouldn’t go to lessons. Eventually, I had to be homeschooled.”

When she went off to college, she said that new symptoms appeared. 

“One day, I was in college and my shoulders started jerking – I went into my first-ever seizure. Even after I’d been having seizures for a couple of years, they still said that it was due to my mental health,” she said. 

But her condition worsened from there. In 2018, Meg became paralyzed from the waist down for a month and had to learn to walk again. 

Doctors were “still saying that everything that was happening was because of my poor mental health,” she lamented. 

After suffering from paralysis, Meg decided to document what she was experiencing online. 

“I posted a video of me walking across my kitchen without crutches, just taking a few steps,” she said. 

“That video went viral and the support from it was amazing. People were saying how proud they were that I’d learned to walk again. It just went from there, really, “ she added.

She then started getting messages from someone who would eventually help her find a diagnosis. 

“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,” she explained. 

“She was so determined and explained all the symptoms to me, and so it was because of this girl in America who I’m now really good friends with that I now have the correct diagnosis,” she added.

After being diagnosed, thanks to her internet pen pal, her next mission was to find a specialist who could help her. Because her condition was so “complex,” navigating the NHS, England’s health system, was rough.

And her symptoms have persisted. 

“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,” she said. 

“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,” she added. 

Her specialist put her on medication after finding “red flags” in her blood, and everything changed for the better. 

“He put me on antibiotics and steroids, and for three whole weeks that I was on those medications, I didn’t have any seizures whatsoever,” she said.

“It was crazy how quickly things turned around,” she added. “I couldn’t believe it.”

Meg found some relief, but because the cause of her illness was unnoticed for years, her antibiotics were less effective as the months went on. 

Luckily, her family found a clinic in Poland that specializes in encephalitis. For treatment, she’ll receive several courses of supportive oligonucleotide therapy (SOT), followed by intravenous immunoglobin therapy (IVIg).

However, all that will cost her around $25,300. 

“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,” she said. 

Meg and her family started a fundraising campaign to pay for her treatment. She said she’s grateful for the support of her community. 

“The support has been pretty insane. We had a local fundraiser in a church hall, and we raised over $5,060 just doing tombolas and raffles in that one afternoon,” she said. 

Meg said she hopes her story will inspire others who have struggled to find a diagnosis for whatever they are suffering from. 

“I really want people to know that and see that so that other people don’t go through what I did.”