Living with MS Years Before Diagnosis

In a recent article posted on MultipleSclerosis.net, author Kim Dolce describes her first appointment with her neurologist upon receiving her MS diagnosis. The doctor began questioning her history of childhood illnesses—and this caused the floodgates to open. She realized she had been living with MS for decades. Suddenly, the pains she suffered in her legs at age 8, and the loss of balance that caused a bike crash at age 12 made sense.

Looking back, she could see that these previously inexplicable problems were no longer inexplicable. This disease had been part of her life all along.

Learning this doesn’t necessarily change her treatment plan, but it does bring Dolce some clarity along with some peace. Her past makes sense.

We recently posted her article on the MultipleSclerosis.net Facebook page, and asked if you related to her experience. More than 100 of you reacted to the post, and many of you commented.

Here’s what you had to say.

“I can remember the aching legs from age 8.”

For many of you, Dolce’s article brought clarity to your own pasts, making sense of events and experiences that otherwise went unexplained. Because you didn’t receive the diagnosis until much later in life, you went through childhood and early adulthood with pains and aches that didn’t fit with what the doctors said. At the time, the pain brought confusion and frustration.

“I was diagnosed at 59, but when reading the above article, I can remember the aching legs from age 8 or so every night, sobbing my heart out and the doctor telling my mother that it was growing pains. That could very well have been the first sign that I was a candidate for MS!”

“I fell often before doctors knew what the problem was.”

“I’ve had undiagnosed symptoms for 40+ years.”

Unfortunately, this scenario seems all too common: That many of you lived with symptoms for decades. As challenging as the physical symptoms were and are, the problem was exacerbated by the not knowing. There’s no community of people to relate to if you don’t know what you’re dealing with. Often, there’s less empathy for problems that don’t come with a diagnosis. Many people find it hard to understand or relate to pains and problems that aren’t named. And only when there is a diagnosis can people understand what is happening to you.

“I’ve had undiagnosed symptoms for 40+ years. I was only recently diagnosed in 2016.”

“I was diagnosed back in 1987 couple flare-ups then and one about 25 years ago. Nothing since but extreme bouts of fatigue!”

“Now that I know what’s going on, it’s a lot easier to accept what’s happening.”

Although getting the news of your diagnosis is never easy, for some of you, the diagnosis was a turning point that brought some relief. The diagnosis meant that you now knew what you were dealing with. There was suddenly a map—a direction that others had taken, so at least you knew how to handle this place called MS.

“Wouldn’t have helped knowing early in because there was no treatment. Soon as I was diagnosed, I began treatment, which helped immensely.”

“Now that I know what’s going on, it’s a lot easier to accept what’s happening with my body. I may not like the diagnosis, but I can now get the proper treatment for my future.”

We want to say thank you to everyone who participated in this ongoing conversation about MS. We hope that this post, as with every other one we share, serves in shedding light on the experience of living with MS, and fosters a sense of connection and community among readers.

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  • Linda Fields says:

    I have been wondering for some time about a familial relationship and MS. Both my mother and her sister had similar health issues as they got older. My mother was diagnosed as Alzheimer’s, my aunt dementia. Their physical symptoms were much the same, balance, focus, word transference, eventually almost identical urinary/bowel problems. My aunt had access to better medical care/doctors, caregivers. But no one even gave a thought to MS. My Mom passed in 1990, my aunt 1998. Now myself, just getting diagnosed at 68 yrs old sure makes me wonder if perhaps they had MS as I don’t believe either had an MRI or spinal tap. Just Alzheimer’s and dementia. No one else in our family has been DX with MS. My brother passed away a year ago, at 78 with what they called dementia in a care home. Title this, “Curious”

    • Angel Blair says:

      Thank you for reaching out Linda, I’m so sorry for your family’s losses and the conditions they were diagnosed with. It can be tricky determining causes and diagnoses at times when evaluating symptoms because MS symptoms alone can look very similar to other health condition and mimic them. There has been more research done into looking at genetics and causal links in MS, one article here talks about family genes and MS, https://mymsaa.org/publications/motivator/winter-spring11/cover-story. Though they say MS is not hereditary and for first-degree relatives the risk increases only about 3-4%, there have been families where more than one person is diagnosed, and yet other times it may only affect one person so this seems to vary. With more research hopefully they will determine the exact cause of MS and from this try to investigate the role of genetics further, too. Thank you again for reaching out Linda and if you have additional questions please feel free to email MSQuestions@mymsaa.org. Thank you and take care. Angel, MSAA Client Services Specialist

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