On the shoulders of giants

My multiple sclerosis diagnosis came as a total shock. Total shock as in going to the emergency room for a follow-up to a nosebleed and leaving four hours later with Bell's Palsy, a CT scan, contrast and no-contrast MRIs, and a preliminary diagnosis of MS. No kidding, it was that fast. I have two photos in my phone as an odd sort of commemoration. They are of the ER exam room just as I saw it shortly after the doctor left the room. My life changed a few minutes before 12:51pm. At least that's what the timestamp on the photo shows.

After hearing the matter-of-fact medical opinion, I sat on the examining table, smartphone in hand, furiously using Google. I wanted to learn more about the two-ton weight that just swung into my gut that left me utterly lost. I could not understand how I could have this chronic illness and display none of the stereotypical symptoms.

When the possibility of multiple sclerosis came into the picture, I did what most people do. I started looking for every piece of information I could find. The Internet was quickly becoming my very best friend. At any given moment, there was a browser page open with multiple sclerosis somewhere in the title. Exactly what causes MS? How do genetics come into play, if at all? Did I catch a virus? Why wasn't it caught before this? Was MS responsible for previous health issues? How long have I had it? What is the best avenue of treatment? Was no treatment an option as well? Am I going to die? Every day searching for answers. The Answer.

It was only after doing in-depth research that I was able to pinpoint my own set of issues as being symptomatic of MS. So much information was available to me at any time of day. Nearly every question had multiple answers and perspectives, and much of it was purely anecdotal. That was helpful when it came to some types of questions, but when it came to deciding my course of treatment I turned to research studies. There was something about the science and statistics that was soothing. While I did not have “The Answer,” I was able to find the information I needed to decide how I was going to face this lifelong challenge. MS became less of a scary fog of unknowingness. Research stripped away the mystery and in its wake left the powerful gift of knowledge. More than an intellectual approach, research would fast become a way for me to open my heart and give back to the MS community.

When asked if I would participate in two disease-modifying therapy studies, I was over the moon excited. When I considered how much of the knowledge we have about MS was gained from people with it, I knew I needed to contribute. Every tool available to me in my fight against this illness was based on the willingness of people before me to join a research study. A few extra vials of blood and 10 minutes of questioning was a small price to pay for helping someone else with MS. Just as I have stood on the shoulders of people before me, I want to provide strong support for those who follow.

Multiple sclerosis research has given me a treatment that enhances my life and a solid hope for a cure. Now that my treatment studies are completed, I am now giving back by connecting with the Accelerated Cure Project (ACP), a non-profit organization (and MS Society partner) that works to accelerate (hence the name) MS research efforts. ACP houses a unique repository of valuable data and biosamples to which researchers around the world have access. ACP also sponsors patient-driven research through iConquerMS™.

We know what we know about MS because others heeded the call to contribute to the MS body of knowledge. If you have benefitted from research, consider giving back by participating in return.
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Anita

Anita Williams

Anita lives in Colorado and is a first-time gardener who has discovered a new passion.

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    gjlisGLORIA  Aug 11, 2016 3:48 PM
    I hear you woman! Good for you and for all of those that follow you in your research interests.
    I am also an MSer, for many years now. So in reading your article, I saw that although we have MS in common, what caught my interest was your love of gardening! I am pretty well a beginner as well but I become fulfilled in the quiet realm of nature, don't you? I find fulfillment in planting 'something' and, in that quiet realm of nature all its own, watch that something of mine grow. Please keep in touch!
  • Tina   Aug 11, 2016 3:54 PM
    God bless you Anita! I have lived with this disease for at least 38 years, but like you I had seen questionable symptoms all my childhood also. I am an RN and it has totally changed and rearranged my life. No longer working I now take time to enjoy my grandchildren and life in general. Learn about the illness, leave your legacy but don't consider it a death sentence! Only strong persistent individuals are presented with this disease and you are one of those individuals! Stay strong...and the other days cry it out!! May God bless your spirit and heart!
  • suzie hieter   Aug 11, 2016 4:07 PM
    I was diagnosed in 1970, before disease modifying drugs, but I am encouraged by what your shared. Thanks.
  • SmartyPants196   Aug 11, 2016 6:44 PM
    I too remember the moment i realized my life would change, i was walking into my neurologist appointment to find out the results of my tests, and i saw his door and thought when i came out his door i would be a different person, and I was. I have progressive MS and have stabilized for ten years, with only a weak leg, heat intolence, and fatigue and severe back pain. I can live with MS and still do my new hobby, writing books. Check out my author page
    https://www.amazon.com/Diane-DeVillers/e/B00BWY3Q9K
    "The Eve Chronicles" by Diiane DeVillers, without getting MS i never would have written three books. MS has made me slow down, i retired early and enjoy a good life now. SUre of course when I first heard the words Multiple Sclerosis, i thought i was going to die, but in my case who knows how long I have? As long as I have my family and friends who are supportive I am fine with living with MS. The average person with MS dies only seven years sooner than they would have lived, quality of life is what its all about. I swim twice a week and i love how it makes me feel. Keep moving, keep loving life, we are just like everyone else, life is good as long as we are here.
  • Terry   Aug 11, 2016 7:49 PM
    I remember very clearly receiving the diagnosis for Primary Progressive MS. Shocked is a very good description. The neurologist would have delivered the diagnosis to me on the examination table,but I insisted on getting dressed and going into his office. I was so dazed. I live in the country and for some reason I did not have a vehicle. I walked half way home, then took a taxi. Two years later I am still able to walk, but I am not able to work due to cognitive issues, fatigue, and extreme numbness in my right hand. This is still a learning process, but I am working on the next part of my life. I am fortunate to have good medical assistance. Best advice is to keep your mind active and keep physically active. Challenging to be sure. Thank You for your wonderful article.
  • Jamie   Aug 11, 2016 8:07 PM
    I'm so thrilled that someone I can consider a friend through MS has finally accepted the courtagoeoysnes and admiration of your peers to help discover a cure. It's hard enough to accept that you have the disease let alone go through a trial with the ACP! Thank you Anita. I just turned 38 and for the past 3 years have held my breath afraid of what I have to look forward to as my life progresses. I too have thought about helping others but am uncertain and frightened by the reprocussion's. Thank you for setting the bar! You are amazing😘😘😘 Sincere gratitude for people like you.
  • Angela Kirby   Aug 11, 2016 9:56 PM
    My diagnosis of MS came instead of confirmation of a trapped nerve! I was so grateful to have my husband with me because I heard nothing else that terror-filled morning. I was able to continue working (with no one being any the wiser) and have spent the past 20 years participating in an annual MS Fundraising initiative. I have come to the point of change and after touring the world last year, walking to try and raise funds for and awareness of MS, I would now like to use what strength and years I have left helping other MS Warriors, realizing I am most probably too old to participate in any sort of trials but seeing so many neat ideas on my travels. How I envy all you have been able to do to help other pwMS during your own journey, Anita. Thank you so very much
  • Mike Spencer   Aug 12, 2016 3:18 AM
    I have had MS for at least 30 years. I often travel around in a wheelchair because my legs cannot carry me to where I want to go. To tell you the truth, my most frustrating thing is the constant day and night pain in my legs which keeps me awake and will not go. It leaves me with constant tiredness and is like a fire burning in my legs. However I get over it with a constant Spence of humour and a realisation that although I am not the person I was for my swipe and children and their children, I am still me, and I must get on. I take no medical treatment and although have done in the past, I know well about their side effects, and am persuaded not to take them again. I would however be pleased to hear from anyone who has the same symptoms and has found a treatment with few or no side effects.
  • Avatar
    oldhippie  Aug 14, 2016 3:53 PM
    It's sort a odd that has happened to you because of a nose bleed, I have had them for many years now but no one has ever connected with MS. But that is something I will now look into as no doctor has an answer about my bleeding, they just cottorise my nose and send me on my way until next time and starts again.
  • Laura Kolaczkowski   Aug 15, 2016 7:35 AM
    Anita, when I read your story I couldn't help but think of the parallels of gardening in the soil vs growing research. Thank you for getting your hands 'dirty' and helping with iConquerMS and our patient powered research. I guarantee the results that bloom for us will be even more spectacular than the things that pop from the ground. Your story is inspirational and I hope others will hear the challenge in your message and join us in our research garden.
  • VIRGINIA "GINNY" MC ALOON   Aug 18, 2016 12:34 PM
    UNFORTUNATELY, THERE IS STILL NOTHING FOR THOSE OF US WITH CHRONIC MS. I STARTED OUT IN 1973 WITH JUST MINOR PROBLEMS, SEEING DOUBLE WHEN LOOKING TO THE LEFT ETC. KAISER GAVE ME A SPINAL TAP AND MS SHOWED UP. I HAD TO RETIRE FROM SAN DIEGO COUNTY FLEET OPERATIONS WHERE I WORKED, AND LOVED MY JOB. .
    NOW MY MS HAS ESCALATED. I HAVE TO USE A WALKER OR AN ELECTRIC CART. CAN'T TAKE TWO STEPS ALONE. I CAN STILL DRIVE WITH NO PROBLEM, THANK THE LORD. GINNY MC ALOON. ST GEORGE, UT NOW.
  • Kpop  Aug 18, 2016 1:01 PM
    I was diagnosed at age 66. Late, I know but doctors speculated my chronic exercise may have "kept the beast at bay ". I just left Emory University Hospital with multiple pulmonary embolisms in both lobes of my lungs. In ICU the doctors said after hundreds of exams, questions, history and genetic testing; all was fine except MS. I was told that inflammatory disease, like MS, can cause PE's. This was really a troublesome thing to find out since only about 30% of people presenting at the level I was in, survive. I have stopped Levonox injections and taking Coumadin daily to prevent reoccurance. Wonder how many more out there have died of "stroke", never realizing their lungs held a "secret killer". My only symptoms were a wet, persistent cough and toward the end, had trouble getting my breath after precious little activity. Comments?
  • Regena Sanders   Aug 18, 2016 2:38 PM
    I was diagnosed in 2002, have had several relapses from 2004 through 2014, I started Gilenya in August 2014, I have not had a relapse since starting Gilenya. Its a blessing not to have to spend most of your summer in hospital. Keep moving and being active is the key to my therapy.
  • Shirley J. cooper   Aug 19, 2016 9:43 PM
    I have secondary progressive MS. With all the money towards research is there a
    therapy for my type of MS.please reply. Thank you
  • Shirley J. cooper   Aug 19, 2016 9:43 PM
    I have secondary progressive MS. With all the money towards research is there a
    therapy for my type of MS.please reply. Thank you
  • Karen   Aug 20, 2016 6:39 PM
    I have relapsing remitting multiple Screlrosis. I have a hard time finding a good multiple Screlrosis pain management that can help me , that really understands my pain and problems. Can't seem to find one that helps me. A lot of suffering has been been this way for some time I live in Texas outside of Houston. If any one could help me I would really appreciate it.
  • Gloria Jackson   Aug 23, 2016 7:36 AM
    I was diagnosed with MS over 15 years ago. It's an uphill journey but with God's strength you will prevail.
  • Della Cobb   Aug 24, 2016 8:22 AM
    Thanks for sharing!.....are you saying..you had no prior symptoms?
    I'm going to my GP today.....wondering if she will send ,e to a Neurologist.
    Thanks.
  • Mary Foust   Aug 24, 2016 10:18 AM
    Great story, you are strong. I appreciate your thoughts and agree. It is amazing how knowledge can calm you. When I was first diagnosed I was afraid of being found dead in my bed by my children. ( I know extreme ) , but who is to say why we have the fears we have. I do Know with reading and listening I have calmed my fears. Thank you for sharing . Have a beautiful Life. Mary
  • Pam G   Aug 24, 2016 3:58 PM
    I was diagnosed in 2013. Woke up one morning with numbness from the waist. That was very scary. My GP thought it may have been a complication from my diabetes. After a week of no improvement from the meds, I was given an MRI and a spinal tap. It was then confirmed that I have MS. I was devastated. I now live with constant numbness in my feet. Occ