Little Engine Patient Advocacy

MSing the Mark: Hypermobile Ehlers Danlos Syndrome Mimicking Multiple Sclerosis

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by

Kristina Kelly
in ,
A watercolor painting of a zebra.

Note: I am not a medical provider. Opinions in this article are based on my own research and personal experiences.

Mission: Diagnosis

After a particularly bad virus the month prior, I awoke to pins and needles in my hands and feet in April of 2019. The sensation was so intense that my feet felt numb and I had to cancel a work trip as I didn’t feel confident enough to drive.

Time passed and I fell deeper into a weird new world. My body felt foreign and drunk. I’d been going to a boxing gym three days a week for years and suddenly I couldn’t get through a 30-minute workout. One of the trainers suggested I get tested for asthma as I could never catch my breath. My shoulder screamed in pain. My vision would go dark. At home, I started running into walls and tripping over air. That first year, the symptoms would come in and out like a Carolina tide. I chalked it up to getting older and moved on.

A year later, the symptoms were coming more frequently. Fatigue, slurred speech, cog fog, weakness, and eye pain joined the party. I saw a neurologist in October 2020. She strongly suspected Multiple Sclerosis (MS). She sternly told me to not wait on the MRI — that MS is a serious diagnosis and early intervention is key. I got the brain and cervical MRI right away.

My results were normal. The very same doctor who told me I may have a serious disease based on my symptoms, looked me in the eyes and said, “I just don’t know what to do with you now.” That was it. I was dismissed. I had the exact same symptoms, but one normal test meant I was totally fine and healthy. I was shocked.

Months later (with more symptoms adding to the list), I sought a second neurology opinion. She also suspected MS. Ordered more MRIs and a lumbar puncture (fun times). All normal. But this time, I was given a Chronic Fatigue Syndrome (CFS) diagnosis. I didn’t meet criteria. It never felt right. Later, a horrible rheumatologist told me that if I didn’t like the CFS diagnosis, I could just call it Fibromyalgia as it is the same thing. They certainly are not (I didn’t meet criteria for fibro either). I was told I likely had Sjogren’s, but then the opposite was written in my medical chart. Rinse and repeat. New doctor. Normal results. Dissed. Dismissed. For years.

Spoiler Alert: It was Sjogren’s and it took over 4 years to get that diagnosed.

Let’s skip to the good part. After genetic testing and stumbling upon a doctor who has the very condition that went overlooked in me for so long — I was diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS). A genetic connective tissue disorder. That answer led to more testing and answers in the form of Mast Cell Activation Syndrome and dysautonomia. 13 doctors, including integrative and functional medical professionals, and not one tested me for any of these conditions despite easily meeting criteria. Heck, despite my requests for more testing that aligned with these disorders. Now, hEDS isn’t acute, rather a genetic connective tissue disorder, which threw me at first. I didn’t start having symptoms until I was 39 years old…or did I?

Looking back, I grew up with chronic GI issues, always reacted oddly to medications (like getting super hyper on Benadryl), chronic sinus infections, near fainting/fainting episodes (always chalked up to blood sugar), ocular and cluster migraines, TMJ, and joints were always popping in and out. After much research and meeting hEDSers, it gave me such validation that I am indeed a zebra.

MSing the Point

So, why was MS the only serious consideration for years? I worked with nonprofits for many years and we’d call MS a “sexy” disease. Before you send me hate mail — MS is NOT sexy at all. In fact, it is so debilitating that it garners a lot of attention in the form of funding and research. It attracts money, decision-makers, and brain power to speed up the diagnosis process and treatment options. Ehlers Danlos Syndrome isn’t “sexy” in these terms (but I do think it is getting better). EDS is the shy kid sitting alone in the middle school cafeteria doing weird things with their joints. I say that with love, zebras. One doctor confessed to me that despite EDS being around since 1908, it was never mentioned in medical school.

When I didn’t fit into that MS box, egos would flare and I’d be dismissed as an anxiety-ridden woman. Once I got my diagnosis, I started reading patient stories and researching my symptoms. Goodness, I did fit into a box! Just not the one they were trying to shove me into. For anyone who finds themselves in a similar boat, this may be helpful for you and to share with your doctors (if they don’t have fragile god-like egos). I also HIGHLY recommend you read The Invisible Kingdom by Meghan O’Rourke. Through personal stories and ample research, she delivers validation and understanding on every page.

Hypermobile Ehlers Danlos symptoms that may mimic MS

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