See what I did there…hilarious. There is SO much I want to share when it comes to food and using food to heal your body. I was so incredibly uneducated as to what I was putting in my body and the negative effects is was/could have been causing. This photo is from 2012, in Korea, 4 years before diagnosis.
I don’t know why, out of the thousands of articles available online about MS, one of the first articles I came across was written by Dr. Terry Wahls, a Dr. who practiced and firmly believed in Western medicine, the same medicine that was failing her and her condition. It took only 3 years from the time of diagnosis of RRMS to SPMS. I won’t go into too much detail as I will provide the link below. As Dr. Wahls’ health continued to decline, she turned to Traditional medicine. Specifically, food.
Before I dive into my chat about food, I want to clarify again, this information is from medical journals, my health care team and testimonies I came across during those hours I would kick back on the couch with a cup a’ joe and read about MS. What’s most important to remember is that every single one of us is different and that the disease affects us differently which is why there are so many unanswered questions. The human body is estimated to house 95-100 billion nerves and not one of us has the exact same nerves affected nor will we experience symptoms the same way. It all boils down to what nerves are damaged and how that nerve decides to affect our body and to what extent. I fully stand behind getting a food sensitivity test so you know what your own body can and cannot digest properly, foods that may cause inflammation etc. What one person should remove from their diet isn’t necessarily beneficial for you too. A food sensitivity test can be done by a Naturopath and if possible, I encourage you to add one to your health care team.
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.
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