Information Huddle

Raising Awareness for Multiple Sclerosis

To kick the month off right, let’s have a brief discussion about Multiple Sclerosis. I talk a lot about having MS, but I haven’t provided information to why it’s such a troublesome disease.

Part of the reason is it has taken me until writing this post to acknowledge the down-and-dirty parts of MS. For the last five years, I have allowed myself a vague awareness of the disease itself, but never sat down and understood the particulars. I would research as far as I needed to, but rarely allow myself to dive deeper because it was too painful to acknowledge.

In fact, if we’ve ever had a conversation in person about my MS, I rarely use the word “disease” when discussing it. You’ll find it to be the same throughout the blog. I don’t like acknowledging that I have a disease. I prefer to use the term “condition” or “situation.”

I recognize that if I am ever to be truly successful in treating and managing my MS that I need to be fully aware of the risks, outcomes, and possibilities of the disease.

What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair. 

There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):

  1. Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
  2. Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
  3. Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:

  • People between 20 – 50
  • People further away from the equator
  • Women are 2 – 3 times more likely to get an MS diagnosis
  • Parent or sibling diagnosed with MS (~1-3% chance)
  • People with low vitamin D levels
  • People who had mononucleosis or another virus linked to MS at one point in their life
  • Already diagnosed with one autoimmune disease

It is estimated that around 2.5 million people globally have the MS diagnosis.

Why Raise Awareness

As someone who has MS, it is extremely important for me to raise awareness for the disease. The more people know about it, the more funding will go towards finding better treatments and hopefully a cure. Unfortunately, there are a lot of misconceptions about MS and the very nature of the disease can be invisible which is why awareness is so important.

Busting misconceptions

  • Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
  • No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
  • Start that family if you want. If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
  • No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

This is what makes it an invisible disability.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

How to Raise Awareness

The rest of this week will detail ways to raise awareness based on your abilities. Wednesday’s post will be about events and opportunities to participate in MS activism and the community. Friday’s post will be about ways to start or participate in fundraising opportunities.

I provided some simple banners you could use on your social media accounts to help raise awareness this month for MS. Please feel free to download them for personal use.

Will there be a Cure?

At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure. From Cambridge University alone:

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.

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The Check-In

Checking In: MS Symptoms

What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better, but on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a cold like this they may feel wiped out but are able to go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep this afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key cause of flare-ups so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick, but I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but since having Jai it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted, but doing what is best for my overall health is more important. My brain fog and memory issues haven’t gone away or lessened it, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days means that I have more energy throughout the day and days I do yoga there might be a greater dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no appreciable changes to my MS symptoms.

Continue reading “Checking In: MS Symptoms”

Personal Motivation

Checking In: Coping with Personal Stress

Today a major milestone in my health journey. Five years ago today, I had my very first MS flare-up. At the time, I didn’t know what it was, but I was lucky enough to get answers less than a year later.

Today’s post contains a more in-depth tale of my journey to the MS diagnosis and what brings about my flare-ups. Read the shorter version here.

2012: The First Time

A few days prior to my flare-up, I finished up my final classes, got my grades in, and flew up to Connecticut to help my parents move. As an only child with one year of marriage under my belt, my parents wanted to leave the cold hollows of New England and join Ash and me in Georgia.

This was a particularly hard journey for me because it meant that I would be saying “goodbye” to my childhood home. We moved in when I was 6 and I had many fond memories stored inside; there were over 20 years of memories and I was extremely sad to no longer have the ability to visit it.

December 13th would be my last night sleeping in my old room, and on the 14th I would help my parents finish loading up the moving truck and help them drive down to Georgia over the next three days.

I was not in a good mood. I was grumpy, irritable, but most of all, stressed out.

It was my second year teaching college students composition, struggling with normal Graduate school stressors, and now the final stress of losing what felt like a family member was too much for me.

But there would be more.

On the 14th, a little more than an hour away from my location, Newtown happened. I had to keep it together to help finish the moving process, but inside I was really struggling with all of my feelings. I had a tight burning in my chest as I swept and mopped the living room floor. I had to keep everything together.

The product of my labor: a clean living room floor. Possibly the only time I did this chore in this house.


We loaded up the truck around 6pm, my mom and I hopped in her car, and we headed south while my dad followed in the moving truck. We were headed towards Pennsylvania where we planned to stay for the night at a motel.

I slept on a pullout bed which was extremely uncomfortable. I was exhausted, so I didn’t think much about the day’s events, and I fell asleep.

When I woke up, there was an oval spot in my right eye’s field of vision. I had a slight headache and I was feeling unwell. At first I thought my glasses were dirty, but no matter how often I cleaned them, that spot wouldn’t go away. I rubbed my eyes thinking there might be some junk with no luck. I didn’t understand what was happening as we went to get breakfast at the local McDonald’s.

Found on the restroom door of that McDonald’s. Even with the spot in my eye I could see how dated this was…

I had had migraines before, but I never experienced an aura prior to the migraine. Normally I would not have a migraine and then boom, migraine without warning. My migraines were increasing in frequency. I would have one once a year and I was starting to get them every 6 months or so, so when I looked up my eye symptoms, it seemed like a natural progression.

Figuring it was an aura, I was relegated to being the navigator when I didn’t have a black skull cap I bought at a gas station over my eyes to help manage what I thought were the beginning moments of a migraine. When we stopped in Virginia for the night we all thought the spot would go away with a good night’s sleep.

It did not. In fact, it got worse. It didn’t cover my whole field of vision, but it was more prominent. The day before, I could kind of see through this smudge. Now it was a translucent spot that partially blocked objects.

I was definitely scared. I didn’t know what was happening and how to fix it.

Continue reading “Checking In: Coping with Personal Stress”