Some of the first questions I am typically asked when I tell someone I have been diagnosed with Multiple Sclerosis are, “How did you know something was wrong?” or “What were your initial symptoms?” I’ll usually describe how I woke up one morning and both of my legs were numb, and how it spread through my body and down my arm into my hand. I have spoken to others, and read stories online about patients who went months, even years with symptoms before diagnosis. It was just a couple of weeks between my numbness and finding out I had MS. For a long time, I wondered, why was I able to get such a quick diagnosis while others have been fighting for years to figure out what was happening to them.

I began to think about how long I may have been having symptoms that were early signs of MS but misinterpreted them as something else. The more I research, the more it seems likely I have had this disease for some time. The years before my diagnosis had been, well, to be perfectly honest, a shitshow. Covid, homeschooling, remote work, skin cancer surgery, reconstructive surgery, loss of beloved family members, changes in job security, and on and on. Like I said, a shitshow. If I was having early symptoms of a disease, they were easily mistaken for stress, anxiety, and grief. Or on the flip side, what if the stress, anxiety and grief caused the MS (there have been studies examining whether stress makes a person more vulnerable to MS). It’s the age-old question, “Which came first: the chicken or the egg?” Did my disease cause symptoms, or did my symptoms cause disease? No matter, what’s done is done. Moving on.

So, more about my (possible) early symptoms. I’ll spare you the details of my episodes of vertigo, tripping, falling, and such, that have happened these last few years. Although they may help support the belief that I have had MS for a while, to be honest, I’ve always been as graceful as a giraffe in high heels. Let’s move forward with the bigger health issues and blame the small stuff on my lack of elegance and coordination.

Why am I so freaking tired all the time?

I love holidays. Love. Love. Love. Any reason to decorate, cook and gather with friends and family is the best, but celebrating Halloween and Christmas are my absolute favorites. Strange combination, I know, but I never said I was normal. Once September begins, I’m breaking out the bats, ghosts, and spiders, while simultaneously planning where the Christmas trees will go soon. I’m anxious to get started on each holiday as soon as possible, but I wait long enough so my neighbors don’t think I am nuts. When I look back to the fall of 2021, I remember how incredibly exhausted I was. Halloween was almost upon us by the time I finally did a little decorating. The kids wanted to have a party, but I told them a lot of people were still hesitant to gather because of Covid. They were disappointed, but I was relieved that I could blame it on something other than myself. I just didn’t feel up to it, and that was a first. Thanksgiving rolled around and I still felt sluggish, but I started prepping for Christmas thinking I would feel better soon. I vividly remember the weekend I began decorating. For the first time in my adult life, I wasn’t excited. As I collected the decorations from storage, my legs felt like they had weights on them. My entire body felt heavy (granted, I did eat a lot of Halloween candy…), but I just didn’t feel like myself. I did as much as I could when I felt like it, but it wasn’t the usual holiday display. My husband noticed and was worried when he would come home, and I wasn’t elbow-deep in glitter, garland, and Christmas music. I blamed it on work, which is exactly what I thought was causing it. The family-owned company I had worked for the last 20 years was in the process of being sold, and rumors had begun months earlier about the future of the business and staff. The sale wasn’t quite as amicable as everyone assumed. Some family members were cutting ties completely, while others were planning to stay and lead under new management. Months of hostility, rumors, and fears of the unknown must have caught up to me. No wonder I was exhausted and feeling horrible. Stress can do that. But, what if? What if it was the beginning of MS symptoms, 8 months before I was diagnosed?

Contacts, Glasses, and Eye Pain, Oh My.

I’ve worn contact lenses since college. I probably could have used them earlier, but the proximity of the auditorium seats to the instructor’s whiteboard/chalkboard made it impossible to get away with squinting any longer. And for those of you too young to know, we didn’t have laptops in college back in my day (oh my God, I’ve just used the term “back in my day”). It was a notebook and pencil kind of era. Virtual wasn’t even an option, there were no smartphones and no Google. You had to show up to class to take notes, research was done at the campus library, and exams were handwritten. It sounds like the dark ages, but it was just the mid-90s, which now is almost 30 years ago. Scary thought. Anyway, back on track… Since turning 40, it seems my prescription has to be strengthened every 2 years or so. Ain’t getting old grand? In January 2021 I had my annual eye exam. Nothing was out of the ordinary on any scans or from the exam, however, I did require a stronger prescription. I ordered a 12-month supply of contacts and started using them when they arrived the next week. Everything was great the first few weeks, but suddenly, I found I was squinting to see road signs. I don’t think I noticed it for quite some time since I was mostly traveling in areas I was familiar with, but when I headed out of my comfort zone and needed to rely on landmarks and street signs, I couldn’t see them. I swapped out the contacts I was wearing with a fresh pair, thinking it might be the lenses themselves, but I had the same problem. The prescription had to be right because they were great the first few weeks. I wondered if it had to do with my computer usage. Before Covid, a large part of my job involved hands-on work with printed materials and marketing inventory, which cut down on the amount of screen time I had. Since the pandemic though, my focus was on more digital marketing, so I was working from a laptop almost the entire day. I was certain the strain on my eyes was probably causing the vision difficulties. I stopped wearing contacts and started wearing glasses. It was an easy transition and I realized I preferred glasses to contacts. All seemed good.

By the time I visited my eye doctor in January of 2022, my prescription was adjusted yet again. My scans and exam still looked great, so all I needed was a new glasses prescription. It was a few months later that I noticed another change in my eyes. I started to have an ache in my right eye, but only when I shifted the direction of where I was looking. It would come and go, with no obvious cause. There were also times that my eyes would rapidly shift left to right, almost as if I had no control over them. It would last just a second or two, so it wasn’t long enough or consistent enough for me to bring it to someone else’s attention. Again, I was staring at a laptop screen the entire day, so I had no doubt it was caused by that and I didn’t bother calling the doctor. But, what if? What if it was the beginning of MS symptoms, more than a year before I was officially diagnosed?

What am I eating that is trying to kill me?

Let’s take it back even further. About five years ago, I began to have issues with my stomach. I would have horrible stomach pains and cramps, some of which had me doubled over in pain. We won’t go into details, but my stomach didn’t like anything I ate and told me so quite regularly. I tried cutting out fried foods, tried to eat more fiber, less fiber, tried probiotics, cut out soft drinks (which I was drinking way too much of at that time), increased the amount of water I drank, and even tried cutting out gluten. Thank God that wasn’t the cause, because I really, really like gluten. I tried everything I could for months, but nothing worked. When I went for my annual physical, I talked to my doctor about it, and she suggested I see her gastroenterologist. I questioned making an appointment for some time though. When I started to lose weight because I couldn’t eat, and my mother threatened to drive me to the doctor herself if I didn’t schedule something, I was finally forced to see what was wrong.

Happy, happy, joy, joy, I was soon scheduled for my first colonoscopy. Based on my symptoms, the doctor wanted to get it scheduled as soon as possible, so she fit me in on November 1st. If you have ever had a colonoscopy, you know that the “prep” happens a couple of days ahead of your procedure, the worst part the evening before. How lovely, I got to spend Halloween that year wishing for death in the water closet as my family hit the neighborhood trick-or-treating. After almost a year of pain and suffering, I found out I had IBS or irritable bowel syndrome. I was certain it was from stress, and based on what I told my doctor, she agreed. We discussed the link between the brain and stomach, and how stress can affect the levels of bacteria in your gut. I had two young kids, a self-employed husband, and a very stressful job. Of course, it had to be stress. But, what if? What if it was the beginning of MS symptoms, 5 years before I was diagnosed?

The more I learn about Multiple Sclerosis, the more I see the link between the health issues I dealt with and the disease.

• Extreme Fatigue / Heavy Limbs – Monoparesis (feeling weakness in one arm or one leg) and paraparesis (partial paralysis or weakness in both legs) can directly result from MS. The weakness can make your legs feel heavy and can cause them to ache.  
• Vision Issues – For many people, vision problems are the first symptom of MS. Three common vision problems for people living with MS are optic neuritis (aching eye pain with movement, like I was having), diplopia (double vision) and nystagmus (rapid, involuntary shaking of the eyes (yep, been there, done that)). Fortunately, the prognosis is good for recovery from many vision problems associated with MS, and I am happy that other than crappy vision, my eyes are all good now.
• Stomach Troubles – Apparently, nerve damage can alter the way your gut functions. IBS is more common in people with Multiple Sclerosis and there is an ongoing debate on whether gut dysfunction triggers MS, or is a consequence of MS.

Even knowing there are links to the health issues I was having and MS, I’m pretty sure a visit to the doctor would not have led to a Multiple Sclerosis diagnosis at that time. Maybe that is why so many people go years before an official diagnosis. So many symptoms can be related to MS, but those symptoms can also happen independently of the disease, or because of another disease entirely. It seems the most common symptom in MS patients, and the one that is usually the “let’s get an MRI and see what is going on” is the numbness or feeling of pins and needles that don’t subside. Wouldn’t it be nice if the numbness was an initial, early symptom, and we could skip all the other ones and catch it before prolonged, permanent damage is done? Better yet, let’s just find a cure and get rid of this awful, crappy, sucky disease. That would be fantabulous!

Here’s the glimmer of hope. There has been so much progress in research, and so much development for new drugs to treat MS, just in the last decade alone. Let’s hope the road has been paved for a cure soon. I’m hoping I see it in my lifetime. Knowing my kids, and anyone else I know and love can avoid what I have been through, would be absolutely incredible.