A woman with multiple sclerosis says she was misdiagnosed for 13 years and told by doctors she should 'exercise' or make herself a 'mixed drink' to ease her severe pain

Woman with multiple sclerosis misdiagnosed for 13 years, doctors say pain was from ‘exercise’

A woman with multiple sclerosis says she was misdiagnosed for 13 years and doctors told her she needed to ‘exercise’ or make herself a ‘mixed drink’ to ease her severe pain.

Lindsay Cohen Karp, 39, a children’s book author from Philadelphia, Pennsylvania, said she suffered from “debilitating fatigue, mobility issues and pain” for more than a decade.

She eventually became ‘unable to walk’ because her stamina was so low – but medical professionals couldn’t 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, disrupting communication between the brain and the body.

A woman with multiple sclerosis says she was misdiagnosed for 13 years and told by doctors she should ‘exercise’ or make herself a ‘mixed drink’ to ease her severe pain

Lindsay Cohen Karp, 39, a children's book author from Philadelphia, Pennsylvania, said she suffered from

Lindsay Cohen Karp, 39, a children’s book author from Philadelphia, Pennsylvania, said she suffered from “debilitating fatigue, mobility issues and pain” for more than a decade.

Lindsay (seen with her sons) eventually became 'unable to walk' because her stamina was so low - but medical professionals couldn't figure out what was wrong with her

Lindsay (seen with her sons) eventually became ‘unable to walk’ because her stamina was so low – but medical professionals couldn’t figure out what was wrong with her

And while she was afraid of what the disease could do to her body, Lindsay recalls feeling “crushing 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 function or bladder
  • Some people with MS may lose the ability to walk independently, while others may experience long periods of remission without any new symptoms.
  • There is no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, change the course of the disease, and manage symptoms.
  • Source: MayoClinic

“I thought I would hang on the edge of the undiagnosed mountain for the rest of my existence,” she wrote in a recent essay for Insider.

The mother-of-two said she visited many doctors to try to find out what was wrong with her – and even traveled to other states.

“I had an unnecessary breast exam because the doctor demanded it,” she recalls.

‘[Another] The doctor told me there was no answer because my body continued to decline until just existing became a struggle.

“Flusive suggestions ranged from exercise to psychotherapy to a mixed drink, like if Smirnoff with a little cranberry juice could keep my body from declining.”

On her blog, she explained that while “walking and standing were difficult”, she finally “learned to live with her new body”.

“I had to walk a short distance, sit and rest, then do a bit more,” she explained.

“My legs ached and I felt like I was running out of energy, like a car with an almost empty gas tank.

“I was pushed, pushed and pushed some more. Constantly doing lab work was my new normal.

“Somewhere deep in my overwhelmed brain, a voice told me to get on with living my life. A shred of hope assured me that my continued medical research would eventually lead to a diagnosis.

Then, after 13 years, everything changed when a doctor performed an MRI and noticed ‘white spots’ on the image of her brain.

“These are areas of demyelination,” she recalled telling him in her Insider essay. ‘Your cerebrospinal fluid has shown signs of inflammation. This is multiple sclerosis.

After spending 13 years searching for an answer, she was finally diagnosed with multiple sclerosis in 2018

After spending 13 years searching for an answer, she was finally diagnosed with multiple sclerosis in 2018

Lindsay (seen with her husband and children) recalled feeling a

Lindsay (seen with her husband and children) recalled feeling ‘crushing relief’ after being left in the dark about what was wrong with her for so many years

Lindsay began taking medication for the disease, which helped her body return to

Lindsay began taking medication for the disease, which helped her body return to “what it once was.” And while she’s still having flare-ups, she said she’s ‘finally recognizing herself again’

She said “his words filling his brain” felt like “the carbonation of a soda pop, fizzing in his mind and smothering his thoughts”.

‘It was a good day. A response meant treatment, and I deserved it more than anything,” she explained.

Now the writer (seen as a baby with her mother) said she thinks about the doctor who finally gave her a diagnosis

Now the writer (seen as a baby with her mother) said she thinks about the doctor who finally gave her a diagnosis “every day”, explaining that he is the only reason her “life still exists ‘ and that his two sons ‘have a mother’

“He spoke definitely, as if 13 years without a diagnosis for symptoms such as debilitating fatigue, mobility issues and pain was just a big misunderstanding.

“The idea that a simple test would provide the answer I had been missing for 13 years seemed like a dream.”

Lindsay began taking medication for the disease, which helped her body return to “what it once was.” And although she is still having 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 is the only reason her “life still exists” and her two sons “have a mother”.

“I think of him every day. I remember his kindness and his ability to think outside the box,” she concluded.

“I acknowledge my appreciation that the universe has connected me to it and allowed it to guide me as I begin my MS journey.

“Without him I would surely still be undiagnosed, unable to walk and without the stamina to carry on. Without him, my boys wouldn’t have a mother.

“Few people can say that their life exists because of one good human. I can. And I will never forget it.

She is currently working on a memoir detailing her experience and often talks about living with MS on her blog.

On her blog, she spoke about not being able to participate in certain physical activities with her children

On her blog, she spoke about not being able to participate in certain physical activities with her children

She said that even though she

She said that while she ‘can’t participate in all the family activities’, she has ‘found activities that match her level of ability’

“There will always be days that I will spend away,” she wrote. “But I hope the times I am present will remain happy and strong in the forefront of their minds”

In one post, she said she was unable to participate in certain physical activities with her children.

“I can’t participate in all the family activities,” she said. “The truth is that my children will remember events without me, and while I am relieved that they can have these experiences with my husband, a part of me is crying for memories that I will never be a part of.”

Although there are some things she can’t do – like hiking – she said she has “found activities that match her level of ability”, like riding a bike.

“When I’m on my bike, I feel like my body is disease-free,” she continued.

“The weakness I feel while walking disappears when I pedal forward. With the wind in my face and my children by my side, we are now forming family memories that they will never forget. And, thankfully, I am one of those memories.

“There will always be days that I spend away. My kids will remember that I couldn’t be there for milestones or adventures once in a while.

“But I hope the times I am present will remain happy and strong in the forefront of their minds.

“Living with MS sometimes means missing out on wonderful days in my children’s lives, but it also means that the times I’m there are all the more meaningful. And it’s worth it.

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