I believe I have had MS since I was 21 years old although I was not diagnosed until I was 33 years old. Part of the reason why I believe I was okay for the longest time was because I avoided wheat (because I thought it triggered acne). When I was 33, I signed on for a marathon and I carbo loaded where I had previously avoided wheat pasta and consuming a lot of bread products. That is when I developed strong symptoms of numbness and ataxia that could not be overlooked. I also developed loud ringing in my ears.
At that point I went to the urgent neurology clinic and my family paid for an MRI which showed demyelination. Since that time and a second MRI that confirmed my diagnosis, my life has changed a lot. I have been living with MS since I was 21 (I believe) because I had symptoms of weakness in my legs (I was a high- performance athlete in my youth) intermittently in my twenties as well as some sensory symptoms that showed up from time to time. I have radically changed my diet in order to manage my MS and it has paid off.
I was super exhausted.
I have studied every expert with MS and feel very competent in my management of it. I did not always feel this way. It has taken me many years to feel confident in my management of it.
In the fifteen years following my diagnosis, I have had some challenging episodes of relapse and have been completely incapacitated at times. One flare I had left me unable to talk and communicate verbally. Another episode I had double vision for 2 weeks. Another bad flare lasted 6 weeks. In that episode, I actually flew home to Kelowna and moved in with my parents until I could function again. In that flare, I lost the use of my hands and felt like I had the sensation of splinters throughout my body. I was super exhausted and in bed for the majority of that flare.
The anxiety and depression of having MS is challenging.
In 2017, I had started running and I had a flare which started with an episode of sciatica that ended up with me being hospitalized because I had extreme pain when I was trying to lie down. I had severe symptoms at that time including clonus. I was put on steroids in the hospital and got out in 2 weeks time. If I stay on my diet which is extremely strict 100%, I feel that I can live in balance with MS. Management of MS is a full- time job though and it is not for everyone.
The anxiety and depression also that comes with MS is challenging. I have done so much work on my self. I meditate every day. I manage anxiety with Emotional Freedom Technique and supplements like L-theanine. I live each day in the present moment and have done training in Mind/Body/Medicine to best equip myself with life long management of MS.
I am grateful for the positive benefits.
Since MS showed up in my life, it has affected every part of my life and I am grateful for the positive benefits that have incurred because of it. I have become more self aware and believe in myself more. I have so much compassion towards myself and my life post MS.
I come from a big family and my siblings have been so helpful to me if I have needed any support. I can keep going because of them and their love for me. I am truly grateful for them. I have a significant other but I have no children.
Empower people with MS.
If you have recently been diagnosed with MS – there is hope. When I was diagnosed with MS, I was shown a graph with a path leading downhill and that was so discouraging to me. There are people that are living in balance with MS all over the world and I am one of those people.
There are programs with other doctors leading that path like George Jelinek (OvercomingMultipleSclerosis.org) in the U.K.
To empower people with MS is so important so they do not feel like a helpless victim of their fate. There is research underlying the recommendations for management of it.
Clinical Trial Hero would like to thank Robin for taking the time to share her story.
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