Hand holding loose hair

MS and My Lost Cause: Hair Today, Gone Tomorrow?

Last updated: January 2023

I appreciate order and consistency, and I imagine many others in my multiple sclerosis community feel the same way. MS serves up enough unpredictability and unknowns, so stability is appreciated. Honestly, I am quite regimented about my routine – it helps me keep some control.

Well, I thought it did until my morning routine got a little hairy.

With the help of my caregiver

During the work week, my caregiver, Jen, comes to our house to help me so my husband, Dan (who also is living with MS), can focus on his full-time job. She helps me with activities of daily living such as laundry, cooking, and trips to the doctor or grocery store.

Did I mention that Jen also helps me with the girly stuff? I mean, don’t underestimate Dan. He helps me get dressed and styles my hair, but there’s something about a same-gender caregiver.

Plus, unlike Dan, she is not dealing with MS-induced clumsy hands. Jen’s hands gracefully slide through my hair as she styles it in an updo or a ponytail. Even just a simple single barrette, my usual style, makes me feel more polished and complete.

Okay, now back to my routine.

Hair realizations

Jen arrives in the morning and is often greeted by my fully dressed self, complete with a tangled mop of hair on my head. Shortly after she puts down her bag, notebook, and bottle of Coke, we head to the bathroom. With a pick in her hand, Jen patiently and carefully tries to remove the tangles and restore my kempt hairstyle. The process takes just a few minutes, but maintaining my appearance is important to me.

Equally as important and quite frustrating for me is the enormous hairball Jen regularly collects as she finishes picking through my hair. I also have noticed an increased number of strands on the bathroom floor, hanging from my clothing, or on my husband’s Velcro-like beard. My hair is everywhere but where I want it to be.

Please, follicles, stay attached. Pretty, pretty please! But kind requests like this don’t seem to work. If they did, wouldn’t we all have an MS-free life?

Looking into losing hair with MS

Instead of investing my time in fruitless requests, I launched my efforts to find answers. Hmmm...where to start? Ask an expert, right?

My hairstylist

To my hairstylist, I went. I wasted no time. “Cortney, have you noticed an excessive amount of my detached follicles when you style or wash my hair?”

“Yes, but I just chalked it up to your bout of COVID,” she replied. “Some of my clients really lose lots of hair six months after initially testing positive. Or, I figured it may be due to some medication you take to treat your MS.”

Interesting answer, Cortney. With that, maybe I also should reach out to my trusted MS community, or heck, ask my neurologist for more insights.

My MS community

So I went on a crusade and asked some of my MS contemporaries through our shared virtual self-help groups and social media communities. I talked to a number of people and asked a lot of questions, but there was no real consensus opinion. Although I did learn that hair loss is a potential side effect of some MS disease-modifying therapies (DMT).

Still, I didn’t feel like I had a concrete answer relating to MS and hair loss.

My neurologist

Thus I asked my rock, my neurologist of nearly 2 decades, about my hair loss. In hindsight, I probably should have started there (I will next time, I swear!). She told me that in her experience, she typically did not associate Rituxan, my current DMT, with hair loss. But she also added the caveat that every patient is different.

My neurologist advised that it would be good to contact my primary care physician to investigate whether I had other potential causes for my hair loss. Causes like hormone changes (ugh, I am getting closer to menopausal age, so there’s that), vitamin deficiencies, or other medications that I am taking. She mentioned stress also could be a trigger.

Still left with questions

This personal quest started with me wondering why I was seemingly losing an unusual amount of hair. After posing questions about hair loss and MS to my hairstylist, friends in the MS community and finally my fantastic neurologist, I fear I am no closer to finding the definitive answer for me.

Perhaps, it’s because this question, like MS, is quite complicated. Just as no two cases of MS are alike, maybe there are no clearcut answers as to whether this chronic disease and its related treatments lead to hair loss.

Have you experienced hair loss?

So, as a person who has made it this far into my personal query, I am asking you: Have you had any experiences with hair loss as a result of your MS treatments or DMT? What have you encountered, what have you been told, and is there anything you’ve done to help control it?

Or is this just me pursuing a “hair-brained” idea?

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