Free Instagram Influencer Report on Evie Meg

this was officially 3 years ago today so i just had to share here since it was very loved when i originally posted on tiktok😅(11.3M views) i still can’t watch this without a smile on my face🤣 some context and info: - i have diagnosed tourette’s and brain inflammation, the inflammation can cause me to have more complex tics than may be typical in tourette syndrome sometimes. - this specific tic is an example of echopraxia! a complex motor tic, which mimics or echo’s a movement i have seen. in this case, the fantastic scene from ‘A Quiet Place ||’ 🤣 it is totally involuntary and out of my control, i had no idea i was going to do this, never done it before and never done it since😅 this tic literally made me stop walking, squat with a dead serious face, and mimic Cillian Murphy. WILD😆 all seriousness- i love the Quiet Place movies, if you haven’t seen i recommend! 🎥 #tourettes #tourettesyndrome #tourettesawareness #touretteslife #aquietplace

294k 436

i never could have predicted this plot twist but she certainly did😅 when i say she changed my life it’s not an exaggeration. i was diagnosed with FND, and being given this label for 3 or 4 years, meant every appointment i was dismissed, gaslit, told i couldn’t be helped and that nothing was physically wrong. so i declined, never getting better, every year getting worse in some way. until we found the real illness, autoimmune encephalitis/PANS, with lyme disease and other infections, all thanks to her💜she set us on the right path and let me tell you it’s a totally different world. all of this now is because of her, and my mum who finds every clinic, every specialist, every doctor, every treatment for me. they are both my heroes💜✨ @pans.awareness.mystory i love you both so much, Jordana fought so hard, for literally MONTHS until i noticed her, just so i would get help. mum fights for me every single day💜 so please if you are diagnosed with FND, and someone says to consider PANS, or lyme, please don’t dismiss it. we’re not saying it to be rude or mean. i was rude to Jordana in the beginning, not being able to comprehend something ACTUALLY being wrong with me, i realise now all of it came from a place of being dismissed by doctors & the NHS for years of my life. i was told it was all mental health related, no physical cause, so after years of that i just accepted it. but eventually i realised too much lined up for it to not to be true. then of course the tests revealed it all. so it could change your life for the better💜🫶🏻 #encephalitis #lymedisease #awareness #autoimmuneencephalitis #pandaspans #basalgangliaencephalitis #bartonella #latestagelymedisease #misdiagnosed #fnd #functionalneurologicaldisorder #misdiagnosis #braininflammation

200k 607

i posted a clip of this on my story, and my DM’s were flooded with encouragement and lovely messages from you. it was suggested i post it, so i put it on my tiktok and again the response was huge. not exactly sure why but thought i’d share here too☺️ thank you everyone for making me feel so strong and bad ass🙈💜💪🏻 *psa: i appreciate you’re trying to help but i do not need unsolicited medical advice. on tiktok there’s dozens of comments of people offering medical advice and i do appreciate the sentiment but i have my own physio, team of doctors and i am being monitored at the gym💜* FAQ’s: 💟 “why don’t you wear a back brace?” i would love to try a back brace like the ones given for scoliosis patients. i think it would feel so much more comfortable and tbh if i was offered i’d accept straight away to try it out. but my issue is muscular, not skeletal. (it’s my muscles not my bones) some say a brace like that for something like what i have would weaken the muscles. it hasn’t been recommended to me or suggested. 💟”have you had botox? try botox!” i have spoken with a neurologist, doctors and physio about botox. at first it was something we considered, then i saw a neurologist who told me that the muscle that i have dystonia in (the QL muscle in my trunk) is huge and would require masses of botox, this could be thousands of pounds 💰 also, my dystonia is so wide spread, it can go to my feet, jaw, eyelids, legs, arms, there’s so many places i could have botox. the main concern though, is i have an autoimmune disease, and an incredibly reactive immune system. it reacts so strongly to infection, medication, how would it respond to a literal toxin being injected? it’s too risky. 💟”isn’t that scoliosis?” yes & no. scoliosis is a curvature of the spine, the actual bone. while an MRI in 2024 showed a very very mild curvature of my spine to the left, this is not the cause of my current appearance. it looks very very similar to scoliosis yes, i am bent over, my spine is curved, and i have one raised shoulder. but the cause of this is my muscles. my QL muscle is contracted 24/7 and has been since May 4th. #dystonia #dystoniawarrior #dystoniaawarenessmonth

152k 794

another slightly heartbreaking trend lol, i really miss tumbling & flipping💕🤸🏻‍♂️in 2023 i couldn’t tumble or do gymnastics because i had loss of function in my legs for a year and a half, so the entirety of 2024 i couldn’t either. i started to finally walk normally February this year☺️ then in May, my dystonia spread to my abdomen and i’ve looked like this ever since. i don’t know when the muscle will finally stop contracting, and even then i can’t tumble on a dystonic hand😕one day when dystonia is a thing of the past, i’ll be flipping and bending again☺️💗 it’s not just the act of doing gymnastics that i miss. it’s the feeling of it, knowing that that’s what my body was capable of, able to do. powerful, strong💗 the feeling of flipping through the air…. that’s what i miss💕 *all the gymnastic clips are from 2021 & 2022, majority 2022* #dystonia #segmentaldystonia #lymedisease #encephalitis #gymnast #contortionist #awareness #dystoniaawarenessmonth

102k 844

wait for it…. ONE YEAR. an entire year. without seizures. for the first time since i was 16😭first time in 7 years. my biggest health win ever🏆✨💗 i still remember my first ever seizure. i was 16 years old, May 2017. i’d just arrived at college. shoulders twitching, unresponsive, wandering around in a daze then suddenly convulsing and unconcious. briefly woke up in an ambulance. no idea what had caused it, assumed it was a one off. but they just never stopped. i never thought this would ever happen for me🥹 my main symptom is gone. i’d love to say for good but there’s a feeling i have that just makes me doubt. but who knows🤭🤷🏻‍♀️💗 i’m still not used to it. just sounds weird to say i’ve gone a year without a full seizure. like hello where are you?😅now it’s been so long without one, it’s made me realise how horrific it was when i was having them, the feeling of them, before and after them, the effects during. like dang i can’t believe i went through that. but also go me, i got through that🥹💗✨ so to anyone who has seizures, just started having them, had them a year, 2,3,4 years, or more, hold onto hope🫶🏻for me mine were caused by brain inflammation, made worse by infections in my body, and towards the end the possibility of autoimmune epilepsy. it’s thanks to my encephalitis and lyme disease treatment that my seizures have finally stopped😭i had seizures for 7 years, this would have been my 8th. early treatment of encephalitis and lyme disease is crucial💗 i wouldn’t have had them for so long and they wouldn’t have progressed if i’d been taken seriously. never stop fighting for yourself!💜👏🏻 #seizure #encephalitis #lymedisease #autoimmuneencephalitis #seizureawareness #braininflammation #bartonella #autoimmunedisease #seizurefree #seizures

91k 2.2k