Living with Multiple Sclerosis

My story isn't like others, very few are the same. However, I never struggled with any symptoms leading up to my initial flare-up and ultimately my diagnosis. I had never had tingling, weakness, issues with my vision going blurry, pain, none of it.

I had in the year preceding the main event had a beautiful daughter, become determined and succeeded in losing a ton of weight to be the most healthy I could to be able to keep up with her. I had built an amazing tribe of people around me and we lifted each other as we worked out hard, hiked high mountains and ran crazy obstacle course races.

In August of 2019, I traveled to Texas for a work trip. I remember posting on Facebook, that it's 112 degrees here, far too hot for this New England native. I was there for a week and flew home, and did a hike up a mountain in Massachusetts with a workgroup and their families including my daughter. I felt great, as always.

The following day was a Sunday, a day of rest. I was laying on the couch, watching TV having a lazy day. I went to stand up to get more snacks and all of a sudden from my chest down felt numb and tingly all over. Like when your foot falls asleep but much worse. I tried to 'walk' or hobble it off, but it didn't go away. I wasn't very concerned and thought perhaps on the flight I may have sat too long and then pushed my legs to hike and my nerves were just misfiring.

I went the week, swimming, doing light yoga, trying to get, what I thought was a pinched nerve, to go away or fix itself. It didn't so I of course, called my primary care physician. When I went in for the appointment she definitely showed concern as we have paid very close attention to my body in the past few years through my weight loss and as she described, knew my body and it was a well-oiled machine, if it wasn't performing it's something, something not ideal happening.

She immediately sent for a full Lyme panel as I am in the woods all the time hiking and even though very thorough and regular with my tick prevention and checks, it could be Lyme Disease. The other two things she thought it could be needed MRIs and it was either Lupus or Mulitple Sclerosis. I smirked and was like, um no chance. I have none of those in my family. Simply total disbelief and that we should be looking for other things.

She nonetheless ordered a full MRI panel of my brain, cervical and thoracic spine. I had my cervical and thoracic scheduled for one day and my brain scheduled for the following day. I had just walked in the door from the first set of MRIs, which was of the cervical and thoracic and the phone rang. When I answered it was my PCP and I will never forget the words that followed, "I am so sorry Sarah, but it looks like you have severe demyelination at your T2, this would explain why you are numb from the chest down, your nerve has been exposed significantly at that point and everything below it will be affected."

I remember just slowly sitting down, thanking her and crying. I was scared of the unknown, what did this mean? All of the thoughts running through my head am I going to lose my capability to walk, will they find more tomorrow when they do my brain.

I went in for my brain MRI, scared, deflated and having 1000s of questions. The results from the brain MRI showed active lesions in my brain as well. I was again called and told that it was definitive, I had multiple sclerosis and my next step was to call a Neurologist.

The following experience was incredibly frustrating. I was going through a deep well of emotions and had tons of questions. I was angry, sad, scared, ... mad. And the neurologist's office said they had one opening in November. It was the end of August. I couldn't feel from my chest down and I had a tightening around my core that felt like an anaconda was wrapping itself around me and squeezing the breath out of me. Later to learn that's called an MS HUG and some people with MS experience it and it's very uncomfortable not to mention it has a horrible name as it isn't a hug at all.

I did some research and found out that Dr. Ann Cabot was the best MS Specializing Neurologist in New Hampshire and I became an ADVOCATE myself overnight.

I took to calling her office every morning at 8 am and when the receptionist answered Id say, "Hi, my name is Sarah Locke, I have recently been told I have MS. I am a success story in the making and know I can manage if not beat this disease but I need Ann Cabot to help get me there. I have sent my medical records, can you please have her review them." And every morning she would say, "Good Morning Sarah, we have received your records and Ann isn't accepting new patients at this time". I would then respond, "I know, but would really like for her to review my file, I will talk to you tomorrow morning, have a great day."

This went on for 7 straight days. Then one afternoon as I was working away at my desk, my phone rang. At the other end of my hello I heard, "Hi, this is Ann Cabot, and I heard you wanted to speak to me". I can't explain in words the feeling of relief that overcame me. I immediately started thanking her and became incredibly emotional. (Even now while writing this I tear up at the memory). She went on to share that she reviewed my records and did believe that I could indeed fight hard against this disease and even though she wasn't taking new patients, a colleague, Georgia, whom she worked very closely with and she would still be very much involved with my care plan through her would take my case. I quickly agreed and she said, "What are you doing tomorrow?" I responded, "whatever you tell me I am", she laughed and told me clear my day and to meet her at 9 am in her office. I quickly took the time off and made sure all my questions were written down.

The next morning I anxiously went to hear what she had to say. I met Georgia, who is absolutely fabulous by the way, and she did all of the preliminary tests to confirm what my PCP had put together. When Ann entered the room I felt comforted immediately. She looked at me and said I was a very determined individual and she knows that I would listen to her direction and take the best course of action. She also shared that typically she does spinal taps to be 100% sure it's MS but after looking at my brain scans doesn't need to put me through that and that I indeed had Multiple Sclerosis. The date was Sept 4th, 2019, it was 9:42 am.

Ann answered every single question I had with complete honesty. She told me she had already called the infusion center at the hospital and I would be heading over there right after my appointment to start 5 days of intravenous steroids to stop the current flare-up I was experiencing. The steroids would settle my nervous system and get it to stop attacking my body, for now. After I should see improvement in my current state and we would meet to review my treatment options.

After 5 days I could sorta feel a difference but from every day forward I seemed to improve a little bit each day and after 30 days even the belting or MS hug subsided. I could feel my toes again and had no numbness in my legs. I wasn't cured but the steroids had stopped the flare-up, now to learn how to prevent those from happening. Turns out that that 112-degree weather I started telling you about, was the cause. I had heat-sensitive MS and any extreme heat could cause of flare-up. No more hot weather, no more hot tubs, no more hot showers. no more overheating my body at all, even naturally by working out or hiking. This was going to be interesting. Enter Artic Cool clothing and ice pack-filled vests and neck cooling rags. I just had to learn how to manage it.

I am very transparent on Social Media and turned to tell my followers. The outpouring of support was amazing and humbling. I knew I had a tribe but I had no idea how vast and deep it went. To have phone calls from people that were halted in their daily activities when they read the news. They too in disbelief as I was at first. Such an emotional time. But once you realize that with new medicine and technology and testing, MS isn't going to kill me, I will most likely continue to walk for several years if not for the rest of my life. It becomes a little easier of a pill to swallow.

Not realizing the fatigue that had been turned on in my body, the nerve sensitivity to every single little touch, even of clothing. That I am still getting used to and struggling with daily.

I went on to select Ocrevus as my disease-modifying treatment (DMT). I chose to go on a disease-modifying treatment because it can help my body fend for itself and not work so hard on its own. It suppresses my b-cells and keeps the flare-ups from happening which in turn stops the lesions from forming. These DMTs are monitored closely as they all have their own side effects and can cause cancers, brain diseases, and some other serious things on top of the normal side effects you hear about. It was a twice-a-year, 6-hour infusion that I had to go through and it knocked me down for a week or two and then only really worked for 4 months before providing me a 'crap gap' which is the time between when the medicine is wearing off and my immune system is waking back up and my next infusion. That window kept getting bigger and bigger so for a more consistent experience I have switched to another b-cell therapy called Kesimpta which I self-inject monthly at home. Much friendly, and easier, controllable experience that thus far I love!

It has been almost 3 years since my diagnosis and since then I have become a true advocate for myself and those with MS.

• I have summited Mt Washington, the highest peak in Eastern US to prove to myself I still can and all along the way raising almost $10,000 for the National MS Society to build awareness and find a cure for this invisible disease.
• I have become a mentor and volunteer helping to host webinars for those in my local community with MS. We tend to self-isolate
• because of our weakened immune systems but also because of our fatigue and seemingly numerous excuses on why we can't do things. We understand each other more than 'outsiders' ever would. We have formed a community.
• I have done the #ClimbMS fundraiser every year where you climb to the top of a mountain and promote awareness and raise funds once again for the National MS Society.
• I have become a member of MS4MS where I am #SpreadingOrange where ever I go because this disease is so close to actually having a cure. That we are so close to learning that one thing that could tip the scale in our direction and perhaps future generations will have to fear having no control of one day being told, You have MS.

I am Sarah Locke and I am a person with Multiple Sclerosis. It doesn't in any way own me but it does define how I now have to live my life. I may look strong, healthy and vibrant and that is because I am, but inside my body is fighting against itself every single day. I am on a DMT that shuts down my immune system and vaccines like the Covid vaccine, the flu shot and others, although I take them as I should and as many times as they will allow, don't actually work as my b-cells are shut off. It's stopping my immune system from protecting me as well as not attacking me. So please know, that I shy away from public places not because I dislike people, crowds, or incredibly fun experiences. I actually miss those things very much. But me even getting the common cold is a health risk Id prefer not to have to be burdened with, let alone something like Covid. I am not scared to get them, I am scared of the long-term effects they might have on my body.

Thank you for reading.