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Appears in Newsflare picks
01:48
Woman's rare condition feels like someone has "injected cement" into her muscles
A woman was diagnosed with a rare condition which leaves her feeling like someone has "injected cement" into her muscles - after a year of being told she was "faking it"."
Lyndsi Johnson, 30, started having sudden falls and her left side of her body, face and eyes would suddenly droop.
But despite countless hospital visits Lyndsi claims doctors told she was "faking" it and there was nothing wrong with her. "
Lyndsi's muscles got so weak she became bedridden and wheelchair bound for two years.
It was only when a neuromuscular specialist ran a blood test that they discovered Lyndsi had a rare antibody which stops signals being sent between the nerves and muscles in February 2022.
Lyndsi was diagnosed with myasthenia gravis - a rare long-term condition that causes muscle weakness - and is now on a tablet which has helped her walk again.
Lyndsi, an intern at a record label, living in Dallas, Texas, US, said: "It felt like someone had injected cement into my muscles. "
"This was taking all sorts of independency."
"I spent years bedridden - I ended up in a wheelchair."
Lyndsi had just been diagnosed with postural tachycardia syndrome (PoTS) in February 2022 - an abnormal increase in heart rate that occurs after sitting up or standing - after years of seven years of symptoms.
She was placed on beta blockers to help with her fainting episodes.
But around the time of this diagnosis Lyndsi started to notice she was falling over a lot.
She said: "I started having issues where I was just falling around my house."
"Especially on my left side. I'd have these drop attacks."
"I ended up in hospital a few times - my face dropping and my left eye dropping."
"If I smiled my left side wouldn't move."
"I looked like I'd had a stroke."
But Lyndsi says she was 'fobbed off by doctors' when she went to hospital.
She said: "They said I was faking what I was going through."
After several other visits to the doctors she was given different diagnosis' - functional neurological disorder (FND) and bell's palsy - a temporary weakness which usually effects one side of your face.
A lot of doctors couldn't work out what was wrong and Lyndsi's symptoms continued. She was even sent to a therapist instead by one.
She said she was hospitalised at least 15 to 20 times during this time.
She said: "My speech was slurred - it almost sounded like I was drunk but I wasn't."
"I couldn't cook. I couldn't do anything."
Lyndsi first heard about myasthenia gravis through TikTok when she heard someone else speaking about their own diagnosis of it.
She said: "I thought 'that sounds like me'."
Lyndsi was finally able to see a specialist who tested her for the antibodies and diagnosed her with myasthenia gravis in February 2023.
After being put on a tablet called pyridostigmine Lyndsi is able to walk again.
She still has to be careful with the different triggers of her condition - stress, infections and weather.
Lyndsi said: "It's like walking on eggshells."
"I can't get sick. I can't get too hot. I can't get too cold."
She hopes to raise awareness for the condition so others can get a diagnosis quicker.
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