After living with a multiple sclerosis diagnosis for five years, Emmy Award-winning actress Christina Applegate, who co-hosts the “MeSsy” podcast with actress Jamie Lynn Sigler, has now been told she doesn’t have it. On“MeSsy,” Applegate and Sigler, who was also diagnosed with MS, allow themselves to be “vulnerable about the curveballs that life can throw,” and what bigger curveball is there than the news that the symptoms you’ve been experiencing no longer have an explanation?

Applegate said her physician congratulated her for not having MS. But, as she said on the podcast, “I’m back at square one where I don’t know what’s going on with me.” Now, she said, doctors have to figure out “what has been going on since 2021, why did this happen?”

MS is an autoimmune disorder where the body attacks its own central nervous system and can lead to significant disabilities. I was formally diagnosed with relapse-remitting MS in 2014 after a grueling path to a diagnosis. I can only imagine how demoralizing it is for Applegate to be back to “square one.” An estimated 20% of people diagnosed with MS do not, in fact, have it. Even more alarming is that many improperly diagnosed MS patients may have received incorrect treatment for decades.

I was initially diagnosed with something not as severe as MS. I was prescribed hormone replacement therapy medication to address a then-unknown ailment, which landed me in an emergency room with heart palpitations. My primary symptoms— a debilitated left foot, a raining sensation inside my head and coldness/numbness of my joints — persisted for 9 months as I cycled in and out of doctor visits.

A second MRI confirmed that the hormone replacement therapy was not working. A lumbar puncture procedure — that is, a spinal tap — showed elevated protein levels in my spinal fluid, identifying MS as the culprit.

After months of uncertainty, I was not thrilled with the results, but at least I had a name for what I was dealing with. The news of Applegate’s misdiagnosis, however, has raised a different set of concerns for me. Now I can’t help but worry that all my co-pays, all my fights with insurance companies to continue my prescription schedule, the excessive bloodwork, the bi-annual MRIs and my research, agony and self-advocacy have been misdirected for a dozen years.

Because if our healthcare system can misdiagnose someone who’s a household name with an illness that affects nearly 3 million people worldwide (including 1 million people in the United States), then those of us with lesser means and visibility can be forgiven for fearing that — despite our past certainty — we might actually be in the throes of an unknown ailment.

Applegate has celebrity and a big platform, and had it not been for her steadfast advocacy, she might still be under the wrong impression that she has MS. But what about the other 20% of misdiagnosed MS patients who may never know they’re misdiagnosed because they do not have the financial or social capital to deepen the investigation into what is actually ailing them? Though Dr. Robert Bermel, the director of the Mellen Center for MS at Cleveland Clinic, told CBS News that the most commonly used treatments wouldn’t hurt a person misdiagnosed with MS, that doesn’t mean such a person won’t worry that they haven’t been made worse off.

Sigler and Applegate were joined on “MeSsy” by Dr. Marwa Kaisey, associate professor with the Cedars-Sinai Medical Center department of neurology, who explained that MS misdiagnoses are so common because there is no single MS test.

A patient might be suffering from another autoimmune disorder, such as fibromyalgia, or even migraines, Bermel told CBS. Dr. Josef Gutman, the director of NYU Langone’s Long Island Comprehensive MS Care Center, told the network that the relevant “symptoms are not necessarily specific in a lot of ways. It’s sort of the story, combined with MRI imaging, combined with other markers like spinal fluid, that help us make the MS diagnosis.” Bermel said new MS diagnostic criteria were just published last year, and that those new criteria should help prevent future misdiagnoses.

In Applegate’s case, her doctor should have known that telling her that she doesn’t have MS wouldn’t be comforting, that she wouldn’t want to be congratulated, especially since it’s now unclear what she does have.

Twelve years into my diagnosis, there are occasional relapses when the disease gets more aggressive, and the general fatigue that comes with living with an autoimmune illness, but I have mastered how to manage what I believe is ailing me, and living with MS hasn’t stopped me from achieving many of my dreams as a working artist, or from doing something in 2021 that seemed impossible in 2014: completing a 15-mile hike.

I hope Applegate’s reset does not send her down a futile path for answers. I have come too far to even consider the psychological and emotional toll of going back to square one.

The post Why Christina Applegate’s MS misdiagnosis is so unsettling appeared first on MS NOW.

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From MS Now.