A woman with multiple sclerosis said she was misdiagnosed for 13 years, and was told by doctors that she should ‘exercise’ or make herself a ‘mixed drink’ to help her severe pain.
Lindsay Cohen Karp, 39, a children’s book author from Philadelphia, Pennsylvania, said she was plagued with ‘debilitating fatigue, mobility issues, and pain’ for more than a decade.
She eventually became ‘incapable of walking’ since her stamina was so low – but medical professionals could not figure out what was wrong with her.
After spending 13 years searching for an answer, she was finally diagnosed with multiple sclerosis in 2018 – a disease in which the immune system eats away at the protective covering of nerves, which disrupts communication between the brain and the body.
A woman with multiple sclerosis said she was misdiagnosed for 13 years, and was told by doctors that she should ‘exercise’ or make herself a ‘mixed drink’ to help her severe pain
Lindsay Cohen Karp, 39, a children’s book author from Philadelphia, Pennsylvania, said she was plagued with ‘debilitating fatigue, mobility issues, and pain’ for more than a decade
Lindsay (seen with her sons) eventually became ‘incapable of walking’ since her stamina was so low – but medical professionals could not figure out what was wrong with her
And while she was scared of what the disease might do to her body, Lindsay recalled feeling an ‘overwhelming relief’ after being left in the dark about what was wrong with her for so many years.
What is multiple sclerosis?
- In MS, the immune system attacks the protective covering of your nerves
- This causes communication problems between your brain and the rest of your body
- Eventually, the disease can cause permanent damage or deterioration of the nerves
- Symptoms include: Numbness or weakness in your limbs, electric-shock sensations that occur with certain neck movements, tremors, lack of coordination, vision problems, slurred speech, fatigue, dizziness, and problems with sexual, bowel, or bladder function
- Some people with MS may lose the ability to walk independently, while others may experience long periods of remission without any new symptoms
- There’s no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms
- Source: MayoClinic
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‘I thought I’d dangle from the edge of the undiagnosed mountain for the remainder of my existence,’ she wrote in a recent essay for Insider.
The mother-of-two said she visited numerous doctors in an attempt to find out what was wrong with her – and she even traveled to other states.
‘I endured an unnecessary breast exam because the doctor demanded it,’ she recalled.
‘[Another] physician told me there was no answer to be had as my body continued to decline until merely existing was a struggle.
‘The futile suggestions had ranged from exercise to psychotherapy to a mixed drink, as if Smirnoff with a splash of cranberry juice could stop my body from declining.’
On her blog, she explained that while ‘walking and standing were difficult,’ she eventually ‘learned to live with her new body.’
‘I had to walk a short distance, sit and rest, and then do a little more,’ she explained.
‘My legs ached and felt as though they were running out of energy, like a car with a near empty gas tank.
‘I was poked, prodded and poked some more. Getting lab work done constantly was my new normal.
‘Somewhere deep in my overwhelmed brain, a voice told me to keep living my life. A particle of hope assured me that my continued medical search would eventually result in a diagnosis.’
Then, after 13 years, everything changed when one doctor performed an MRI and noticed ‘white spots’ on the image of her brain.
‘These are areas of demyelination,’ she remembered him telling her in her Insider essay. ‘Your spinal fluid showed evidence of inflammation. What we’re dealing with here is multiple sclerosis.’
After spending 13 years searching for an answer, she was finally diagnosed with multiple sclerosis in 2018
Lindsay (seen with her husband and kids) recalled feeling an ‘overwhelming relief’ after being left in the dark about what was wrong with her for so many years
Lindsay began taking medication for the condition, which helped her body go back to ‘what it once was.’ And while she still has flare ups, she said she ‘finally recognizes herself again’
She said ‘his words filling her brain’ felt like ‘carbonation from a soda, fizzing through her mind and stifling her thoughts.’
‘It was a good day. An answer meant a treatment, and I deserved that more than anything,’ she explained.
Now, the writer (seen as a baby with her mom) said she thinks about the doctor who finally gave her a diagnosis ‘every day,’ explaining that he’s the only reason her ‘life still exists’ and that her two sons ‘have a mother’
‘He spoke definitively, as if 13 years of no diagnosis for symptoms like debilitating fatigue, mobility issues, and pain, was just a big misunderstanding.
‘The idea that one simple test provided the answer I’d lacked for 13 years seemed like a dream.’
Lindsay began taking medication for the condition, which helped her body go back to ‘what it once was.’ And while she still has flare ups, she said she ‘finally recognizes herself again.’
Now, the writer said she thinks about the doctor who finally gave her a diagnosis ‘every day,’ explaining that he’s the only reason her ‘life still exists’ and that her two sons ‘have a mother.’
‘I think of him every day. I recall his kind nature and his ability to think outside the box,’ she concluded.
‘I acknowledge my appreciation that the universe connected me to him and allowed him to guide me through the start of my MS journey.
‘Without him, I’d surely still be undiagnosed, incapable of walking, and with no stamina to go on. Without him, my boys wouldn’t have a mother.
‘Not many people can say their lives exist because of one good human. I can. And I will never forget it.’
She is now working a memoir detailing her experience, and often opens up about living with MS on her blog.
On her blog, she spoke out about not being able to participate in certain physical activities with her children
She said while she ‘can’t participate in every family activity,’ she has ‘found activities that fit her ability level’
‘There will always be days I spend on the sidelines,’ she wrote. ‘But my hope is that the times I am present will stand happily and strongly in the forefront of their minds’
In one post, she spoke out about not being able to participate in certain physical activities with her children.
‘I can’t participate in every family activity,’ she said. ‘The truth is, my children will remember events without me, and while I’m relieved they can have these experiences with my husband, part of me is mourning the memories I’ll never be a part of.’
While there’s some things she can’t do – like hiking – she said she has ‘found activities that fit her ability level,’ like going for bike rides.
‘When I’m on my bike, I feel as though my body is disease free,’ she continued.
‘The weakness I feel when walking vanishes as I pedal forward. With the wind in my face and my children beside me, we now form family memories they’ll never forget. And, thankfully, I am a part of these memories.
‘There will always be days I spend on the sidelines. My children will remember that I couldn’t be present for important milestones or adventures from time to time.
‘But my hope is that the times I am present will stand happily and strongly in the forefront of their minds.
‘Living with MS sometimes means missing wonderful days in my children’s lives, but it also means the times when I am present are that much more meaningful. And that makes it all worth it.’
