In order to accurately paint the picture it is essential that you understand that an active lifestyle has always been a part of who I am. So much so, that my passion for health was ingrained in my career as a health and fitness spokesperson and TV correspondent. Being active was a significant element in my relationship with my husband and in our family activities with our children.
Looking back, my MS emerged much earlier than previously thought. However, my only symptom was fatigue which we attributed to having 3 babies in 4 years, who wouldn’t be tired? Looking back, my extreme fatigue was certainly a sign. I would fall asleep anywhere: on the couch at home watching TV, at the neighbors visiting on their deck, at a restaurant during dinner with friends, and definitely anytime I was riding in a car as a passenger. The fatigue was so significant that we thought I may be narcoleptic and I went for a sleep study, from which the results were normal. Knowing what we do now, that fatigue is the most prevalent MS symptom, I wish I had pursued the issue further
It's Spring 2015, I am running with my neighbors Mary and Dawn. We would run 3-4 miles around 5:30 AM. During our runs, I began tripping at about 2 miles. The symptoms would wax and wane over the next year, so I attributed the tripping to simply being tired. Spring of 2016, Mary and I were on the last lap of our run downhill. I tripped and slid to halt on the sidewalk. Nothing was broken however that was the day that I changed my behavior and stopped running outdoors. That summer I only ran on the treadmill because the tripping was now a regular part of the workout. As Fall approached I began experiencing balance issues. I was a dancer in my youth and combined with my years in fitness, I always had amazing balance. During my strength training I was having to hold onto something, my legs would quickly fatigue and feel weak. I finally resigned to the fact that if these issues were significant enough to change my behavior, then I should look into the cause.
Following an initial exam from my Dad (an orthopedic surgeon) sent me to a neurologist, who ordered an MRI of my brain and spine. It was determined that I had lesions consistent with Multiple Sclerosis. This entire process happened in the span of 10 days which is not the norm. I admit I have been spoiled with a physician for a father, I have never had to, nor in this case did I have to, wait as long as most people would. Those 10 days were excruciating, waiting to hear if I had a tumor or a neurological disease of some kind. I can’t imagine waiting weeks or months for answers and my heart goes out to patients in this position. The expedited process was a benefit, but it did mean that my Dad was the one to get the MRI results. Being the honest person he is, when I asked him if he had the MRI results he couldn’t lie and ended up telling me over the phone. I remember his exact words “The MRI showed lesions consistent with Multiple Sclerosis”. Those words had to be the most difficult diagnosis he had ever given a patient. I barged into Woody’s office, told him to get off his work call, and handed him the phone to speak with my Dad. At this point, I dropped to my knees and started to cry.
A dear family friend, Dr. Goltschman, helped me get into a top MS physician at Barnes. My doctor has been aware since our initial appointment that I was not going to let MS stop me. Although I know he may have wished at times that I would stop certain activities, he supported me in the medicines and therapies necessary to keep me functioning at as high a level as possible. Over the last 3 years I have been on 3 different medications. The latest being Ocrevus, an infusion that I would receive every 6 months. Up until February of this year Ocrevus was successful at keeping my MS in remission. Since February, my gate abnormalities and lower body muscle weakness has increased rather significantly by my standards. I have gone from being able to walk 2 miles (not at my pre-MS pace but that’s okay) before my gate issues kicked up to now only being able to walk ½ mile before the tripping and weakness would kick in.
It’s important for me to mention that each patient’s MS journey is unique from the frequency of exacerbations (episodes) to the symptoms and disabilities they experience every day. As I mentioned earlier, fatigue is one of the most common and one of my most significant. MS has chosen to attack me in a variety of ways from the chest down. Beginning with my gastrointestinal tract with indigestion and nausea and working its way down. My lower body seems to have taken the brunt of the disease. Starting at the hips I have spasticity or tightness in my hamstrings leading down the back of my legs into my calves. In his constant research, Woody discovered Botox injections as a potential treatment for the spasticity. Physiatrist, Dr. Alavarez has administered Botox to the back of my legs for the past year which I truly feel has helped me to stay as active as possible. I also have what many MS patients refer to as “jelly legs” which is a catch-all term for overall muscle weakness in the lower body which sets in during any physical activity. This is magnified by the enhanced sensitivity to heat. Ending with my feet, is the clonus brought on by the demyelination caused to the nerves by MS. In very non-medical terms, this means when I put pressure on the balls of my feet, they vibrate up and down. At times, the clonus causes my ankles to give way and the vibrations cause me to lose control of my legs.
It was May 2018 and for the first time since my diagnosis I felt content. I had adjusted to my new norm: rather than exercising on my own I now took classes so I wouldn’t quit when I became frustrated by my limitations, I would do the elliptical or walk uphill on the treadmill since I could hold on when my clonus kicked up, I took naps to help with the fatigue, I had found a GI physician that understood my MS issues and was successfully providing relief. I was in a place of acceptance until February of this year when I began experiencing increased symptoms. Although I thought I was hiding them well, they were evidently quite apparent to those close to me.
Around the same time, Woody and I went to a dinner party and met someone who knew of an MS patient (Randy Gum) that had a stem cell transplant. Luckily, Woody has been my determined advocate since my diagnosis and jumped into action by following Randy through my Facebook account. In May of this year, Randy posted that he hasn't been on Facebook because he has gotten his life back and is enjoying every day. This inspired Woody so much so that he immediately reached out to him and what a great person Randy is!
Being the daughter of a physician and Woody having been in pharmaceuticals for 20 years, it's all about evidence based medicine…data! Randy sent Woody trials from all over the world and they all said the same thing, a stem cell transplant is a chance for a cure. Depending on the patient’s MS progression, all the trials showed a 75% - 90% chance to stop disease progression. We had a dear family friend and hematologist, Dr. Moriconi, look at the data as well. He took it a step further and found his own data that supports what Randy sent us. There are studies ongoing in several cities in the US but since this procedure isn't FDA approved, the inclusion criteria is strict. Due to my current MS level, I do not qualify for the trials here. Of course, we would have preferred to stay in the US however now that we have hope for a cure we can’t let anything stop us.
On September 7th, we are flying to Moscow for a stem cell transplant. Woody and I have done our homework and are ready for the fight! I have connected with patients from all over the world that have had this procedure in Moscow. It wasn't easy but they all said it was worth it. Every one of them said if they could change anything they would have done it earlier. We couldn’t do this without our INCREDIBLE support system. Our parents, families, and friends have been amazing since my diagnosis and have shown overwhelming support of this stem cell transplant journey. We are beyond grateful and blessed to have so many people willing to help us take care of the day-to-day and to most importantly love and support our 3 beautiful kiddos. I have learned many lessons from my MS journey that I will carry with me the rest of my life. Now it is time for the CURE!
· Learn more about Heather's procedure in Moscow: https://hsct-russia.com