Everyone Has a Unique Diagnosis Story

Everyone living with MS has been diagnosed at different stages in their lives and each has a unique story and experience. We wanted to know more from our community members, so we asked a simple question: “At what age were you diagnosed with MS?” Not only did several hundred community members respond, but we heard bits and pieces of so many different diagnosis stories. Here’s what some of our community members told us.

Diagnosis at any age

Many of our members reported completely varying ages of diagnosis, including the following responses:

“At 24 I was diagnosed… now it’s 10 years and 4 kids later.”

“I was 29 years old, started with numbness & tingling in left foot… within a couple of days both legs were numb & tingling.  After a month & a bunch of tests I was told it was MS.”

“They told me in my 20’s it might be MS, I didn’t get a diagnosis until I was 50.”

“I was diagnosed at 43 in Jan 2014.”

“For me it was two years ago at the age of 55 years old.”

“I was diagnosed at the age of 60 in 2015.

“I was 41, but had symptoms a few years prior.”

“The official diagnosis came when I was 21

“I was diagnosed at 52 years old.”

There is not often a direct path to diagnosis

Many of our community members have found that confirming their MS diagnosis was not a simple nor a fast process. A large portion of our community members experienced symptoms for months, years, or even decades before getting an actual diagnosis.

“I was 23, but I had undiagnosed left sided weakness and heat intolerance since about 14

“For me it was at the age of 29, but I started showing symptoms since the age of 15. I was hospitalized for weeks because of numbness on my left side from head to toe. They ran the gamut of tests they had back then and had no idea…

“I was 38 but took 8 years to get the diagnosis!

“I was diagnosed at 43 years old, but I had been experiencing symptoms for at least 15 years. It almost came as a relief, because at least now I knew.”

“Diagnosed at 54, with weird symptoms for over 2 decades.”

“Symptoms at 26, diagnosed at 52.

“Probable diagnosis at 28 … definite at 33”

“My first symptoms at 45, final diagnosis at 48, after misdiagnosing and treating sinus area pain”

Incorrect diagnoses

Diagnosing MS can be a challenging process; early symptoms can often be suggestive of several other conditions. Not only did many of of our community members report having a long journey to diagnosis, but also, having stops along the way where they were misdiagnosed, or treated for something different.

“Diagnosed at 56….it took many years as it’s a disease that masks others…they thought it was Lupus for many years”

“I was 34 but misdiagnosed for 10 years”

“I was 33 years old, but was misdiagnose with Epstein-Barr for seven years”

“I was 29 but I had been misdiagnosed with hemiplegic migraines for year before”

 “At 31… Was told it was a brain tumor…

“I was diagnosed at 19 but had symptoms my whole life doctors thought I had a stroke or diabetes or just bad migraines”

Regardless of age, the road to diagnosis may not be a direct or simple one. An MS diagnosis can come at any time in life, and can change everything.  Whether you’re diagnosed at 15, 55, or 95, we’re here for you! We hope you’ll continue to share your diagnosis experiences with the MultipleSclerosis.net community.

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