The day had come for me to meet the Neurologist; my mom came with me of course! He did the same tests with me that my GP did, asked a few questions, talked a little more in detail about my symptoms, how long they last, how often they come and go, etc. I am not going to say whom I saw because it was one of the most negative experiences of my entire life. The Neurologist confirmed that I had MS, he also continued to tell me there was nothing I could do, the medication only affects your body in a negative way. He continued to tell me to live a positive, healthy lifestyle and just hope for the best. I stopped talking, thanked him for his time and my mom and I proceeded to the elevator to the parking garage. “Are you ok?” my mom asked. Knowing this wasn’t her fault but feeling overwhelmed, angry, disappointed, scared (insert negative emotion here) I asked her to please not talk to me right now. This story is the beginning of what led to my tears in the car on the way home. How could my GP tell me not to worry? Why does everyone keep telling me that MS research and medication has come a long way and there are so many things coming down the pipeline, yet, this doctor tells me “sorry about your luck”. I was furious with everyone who was trying to make this seem like no big deal and giving me false hope.
I’ve already briefly touched on some symptoms I experienced which led me to eventually see my GP. What I didn’t do but will focus on now, are the details and next steps leading up to and after my diagnosis. I have read that there are 13-ish conditions that mimic MS. If this is the case, how do we know? How does my doctor know for sure? Great questions! It is very important to be accurately diagnosed, this means seeing more than just your GP and at LEAST having a brain and spine MRI. If the MRIs are inconclusive, some doctors may opt to do the lumbar test just to be sure. My MS specialist said my MRIs were “textbook MS”. I asked how he knew for sure it was MS after learning of misdiagnosis and the other conditions that mimic MS. “Well, although you have symptoms that are consistent with other conditions, those conditions do not always show lesions on the brain and spine. You have lesions on the brain and spine, and where they are located is consistent with MS. If they were located here or nonexistent, we may be looking at a different condition”, my doctor explained. Not word for word but you catch my drift!
I will discuss steps I took before my diagnosis and then outline the other conditions, which I have read, can mimic MS symptoms. When I finally went to the doctor’s and explained the numbness and other things I had been feeling, my doctor sent me for blood work, testing my vitamin D and B levels, hormone levels etc. I had a requisition about 2 pages long! Aside from this, we did a few tests in his office that tested my reflexes, my balance, my strength and my sensations (ie- I would tell him if something was “sharp or dull”). My doctor explained that just as a precaution, he was also going to order a spine AND brain MRI to see if there is anything going on inside that we can’t see. Thankfully, I have an amazing doctor who looks at all possibilities before placing a title on something.
I had my spine MRI done first and my brain MRI was to follow in about 2-3 weeks. In the meantime, my doctor called me in after my first MRI came back and he said something along the lines of “I am going to put you in touch with a neurologist to have a look at these as well. There is no cause of major concern as we still don’t have your brain MRI yet but, I am not a neurologist and as much as I can understand MRIs I would prefer you see a specialist as well”. I left the office thinking, great! I love how thorough my doctor is- there will be no room for misdiagnosis and a specialist will be looking at the images, I am on the right track!
I have a confession to make… The charming, positive, all around great gal that metaphorically stands before you, didn’t come easy. Let me back track a minute before the “Ok! No problem, what do I need to do”…. Back to the tears in the car on the highway after leaving the MS clinic (which was an overall positive experience to be honest… Doctor’s are awesome). My Mom saying, “Ashley, this is going be fine, MS research has come so far…. It’s not like it used to be” and me aggressively saying, “I’m allowed to be sad!!!” which was when my mom knew to stare forward, drive and let me have my much needed moment.
I can write to you now, have a positive outlook and really truly be hopeful because of the amount of people (over and above family and friends) that were introduced into my life who had been diagnosed just like me. We chatted via emails and facebook messages, they assured me “we” would be ok, and to this day, I tear up because of how that statement was written. “We” I already had a support team of MS warriors around me and as of today, I still haven’t formally met them.
This is why it is SO important to have a voice. Without mine I wouldn’t have met them, people in my life wouldn’t have known of my diagnosis which wouldn’t have triggered them to put me in contact with someone they knew etc etc etc. So here I was, diagnosed 3 days in and I’m already able to ask much needed questions to individuals who had been living with MS. I had verbal diarrhea through email, apologizing for potentially asking the same question 3 times… The individuals that came into my life, unexpectedly… who didn’t owe me a thing, took the time to help me. When my family and friends were trying to lift me up this unexpected support system kicked me in the ass and said “Move it”. Here I am, trying to pay it forward and offer the same support to others.
I was newly diagnosed with MS in August 2016.. the 11th to be exact, I will never forget that day. I had been experiencing numbness in my feet for quite sometime that I chalked up to “poor circulation” due to being a major couch potato for last couple of years. After several months went by, the numbness started to shift to different locations, my legs would feel like I had hundreds of elastics around them at any given time, my left leg would become heavy and I felt like I was stomping, or walking flat foot and I had a few episodes where my abdomen felt extremely tight. Not the, “I can’t breathe” tight, but it felt like I had a really thick, tight belt on. Through all of this, I had been to my doctor and had gone for a brain and spine MRI to “rule out MS” and here we are. I was fortunate enough to be able to see an MS specialist almost immediately after diagnosis and started on medication almost within a month. Having a good team of Doctors is so crucial. I am currently taking Rebiff injections 3 times a week. Side effects are not ideal….. but tolerable and could be much worse.
When I was diagnosed my immediate thoughts were, OK! No problem, so what do I need to do? I’m going to research the hell out of this and do everything exactly right, or so I thought. I went into major information overload, MS info being sent my way, articles, blogs, feeds, webinars, doctors…. STOP!!! I couldn’t take it anymore. I knew people were trying to help and I asked for the help but it was consuming my life with MS and that was exactly what I didn’t want to happen. One of the first pieces of literature I came across when researching MS was about a Medical Doctor from the United States who suffered from PPMS and was in a wheelchair with head support. This caught my eye because the doctor had a photo from the present of her on a bike with the title reading “I put my MS into remission” or something along those lines. This doctor took the best of the best medicine (according to her) but was just very unlucky. She mentioned how she turned to food and lifestyle and what’s called the Autoimmune Paleo lifestyle. I started avidly researching how foods can harm or help heal our bodies and I thought, this Doctor is living proof! For me personally, these findings, that particular article, brought hope to a very scary world of the unknown that we all call MS. It doesn’t make everything better as nothing is guaranteed but it gave me another route to look at… more to hope for.
So why did I want to start writing on the Someone Like Me? I’m glad you asked. For selfish and unselfish reasons to be honest. Writing helps me clear my mind, talking about it in silence through written words rather than verbally, helps… AND! I want to be able to help support others who are or were newly diagnosed. Those feeling scared, helpless,hopeless, shocked, whatever the case may be. My thing is, MS is not going anywhere so how can I turn this into something positive, or at least have positive aspects of it. Supporting and helping to educate and motivate others. That’s it. I am lucky enough to have a health care team that work hand in hand with each other and so I have access to tips and tricks and various info that some may not have access to due to financial reasons, lack of benefits etc. If I learn something that could be or IS beneficial, I want to share it. Knowledge is power and the more we know the more questions we can ask our health care teams and make sure we are doing what’s best for us personally. As I trail off I will remind you that life is uncertain for everyone, not just those with MS. Symptoms could get progressively worse…..perhaps not. Months can go by with no symptoms; months can go by with no break in symptoms. You could also be incredibly healthy, clean bill of health and (knock on wood no one ever experiences this) walk outside and get hit by a car. Seems dramatic right? Really though…. Nobody knows what tomorrow brings so try not to dwell on the what ifs even though its not always easy.
I was diagnosed with RRMS 3 years ago at the age of 31. I had been experiencing numbness on the left side of my body for months and MRIs showed lesions everywhere. I remember feeling relieved for a brief moment because it wasn’t a brain tumor. My relief quickly faded after I asked the Neurologist if I should continue to try to have a baby. (My husband and I had been trying to conceive with no luck for several months). What he told me broke my heart. He believed it was important to start treatment right away but the medication was not safe for pregnant women. Also, many women experience a relapse postpartum and a relapse could affect my ability to look after my baby. I had a tough decision to make.
On April 30th, I attended the Operation Med School (OMS) Conference at UBC as an Ambassador for the MS Society. The conference is a day-long event held annually for grade 12 students and undergrads who have expressed an interest in attending medical school. It gives them the opportunity to hear from and meet medical professionals to learn more. Each year, OMS chooses a charity to donate part of proceeds from the conference to. This year, they chose the Canadian MS Society.
I spent 3 days preparing a power point presentation on MS and NMO and the work the Canadian MS Society does. My friend Taryn, who works for the BC-Yukon Division, joined me at the conference for support. I spent the afternoon giving my half hour presentation four times-there were 200 students in attendance, so they were broken up into groups of 50.
I decided that it would be interesting for the students to get some hands-on experience about what it’s like to struggle with some of the symptoms of MS and NMO, so I bought along some props to help me illustrate my point. I had one volunteer from the audience come up and put a high heel shoe on their left foot and a swimming flipper on their right and then asked them to walk a straight line. The idea was to simulate what it would feel like to try and walk with a lack of balance (the high heel) and foot drop (the flipper). All of the students who volunteered were trying to hold onto the table for support and agreed that there’s no way they would be able to walk around campus for a whole day like that.
GUEST BLOGGER: PASCALE LAVALLÉE
I remember that day five years ago. My dad was with me. We were sitting in the waiting room at the neurologist’s office. The secretary didn’t look very friendly – you know, the kind of person who always looks as though you’re bothering her. There were hundreds of files in the cabinets behind her. All those sick people who needed a file here to get better. I remember feeling uncomfortable to be sitting there in that chair. I felt as if I was taking the place that belonged to someone who really needed to see the doctor. There was nothing wrong with me – no more symptoms at all. It was just fatigue, or maybe the side effects of my birth control pills. So when the neurologist invited me to come into his office, I went in alone. But he suggested that I go get my father from the waiting room.
Then the diagnosis: multiple sclerosis. To me, it sounded like a skin disease. Maybe that explained my problems with eczema. When I turned to my father, I could see that something was wrong, but I knew absolutely nothing about neurology and I had no clue. My father grabbed my hand and gave me a hug – a strong hug, full of love and pain. When the neurologist started to explain the disease to me, I tried to figure out what was so serious about it. I understood that people with the disease often end up in a wheelchair after a few years. OK, fine, I can live with that, but then what? Am I going to die? Am I going to become a vegetable? Am I going to be unable to remember the people I love? No, no and no. So I was still trying to work out what was so bad. The only thing I had in mind was a planned trip to Asia; I told myself that, as long as I could travel, everything would be fine.
The design is a stylised ampersand. (The “&” symbol.) I love the symbol being the font/typography enthusiast that I am, but didn’t want to have the same tattoo that a zillion other people are walking around with. I came across this particular design and fell in love. I did some digging and managed to track down the artist, Beth Sicheneder. I sent her an email to see if she would give me permission to use her design. She very generously gave me her blessing. It’s important to seek permission to use another artist’s work-It’s the right thing to do and personally, I believe in karma. I want to keep mine good!
I knew that I did not want this done in black ink with thick heavy lines. I wanted it to be subtler and more feminine. Ashley, the tattoo artist I’d chosen to do this piece understood exactly what I meant and suggested we use a tiny needle and dark grey ink.
On January 18th, I flew off to Toronto to serve my 2nd term as a Community Representative for the Canadian MS Society. This year, I was assigned to the Clinical and Population Health (CPH) Committee, which deals with research related to mental health/quality of life research in relation to MS patients. It was really encouraging to know that researchers and clinicians are invested in finding ways of treating the whole patient and helping to address the unique mental and emotional challenges MS patients face living with this life-altering disease. (more…)