I was introduced to Multiple Sclerosis many years ago when my aunt was diagnosed with the disease. I was too young to fully appreciate the significance of her diagnosis, but I remember feeling the sadness among adult family members as we walked tirelessly through the rain in an effort to raise money for Multiple Sclerosis research. Unbeknownst to me, I was helping to raise money and awareness for a disease I would one day acquire.
The disease remained at arm’s length for most of my life; I was only reminded of its ferociousness at family gatherings when I witnessed my aunt’s decline in health. As the family grew older, there was less opportunity for family reunions and Multiple Sclerosis became like the crazy classmate you lost touch with after elementary school; you know he is out there, but there isn’t much effort to be reunited. Well, unfortunately, Multiple Sclerosis sought me out, knocked on my door, and informed me he was moving in… forever. Since I cannot kick him out, I have had to get to know him. Here is just a little information I have learned about Multiple Sclerosis.
The medical term “Multiple Sclerosis” is a fancy way of saying, “many scars.” The scars are formed on the brain and/or spinal cord by a confused immune system that mistakenly identifies the myelin sheath, the protective covering of nerve fibers in the central nervous system (CNS), as a foreign invader. The immune system attacks the myelin sheath, damages it, and leaves behind many scars. Unfortunately, this process does not usually occur once but numerous times throughout one’s life, causing extensive damage to the CNS. With the messaging system damaged, an individual experiences a litany of lifelong symptoms, some easily noticed while others remain hidden from onlookers (cognitive problems, imbalance, difficulty walking, spasticity, burning, tingling, facial pain, vertigo, incontinence, fatigue, bladder problems, depression, sexual problems, etc.). The symptoms one experiences are individualized, no two persons have the exact same symptoms, though there is usually some overlap.
Still the disease that affects an estimated 400,000 Americans and over 2.3 million people worldwide remains, to a large extent, mysterious. Yes, it has a name, and its actions after onset are well documented, but research has yet to fully uncover its cause. There is believed to be a genetic link, but “bad” genes do not guarantee one will get the disease. There seems to be an environmental aspect to the onset of the disease as well, genetics cock the hammer while an environmental factor pulls the trigger. It’s quite cruel actually, for it places at least part of the blame on those suffering. If only they hadn’t enjoyed a certain food or hadn’t chosen to live at a certain place, perhaps Multiple Sclerosis wouldn’t have found them, some wonder in pain. Unfortunately , all the pondering and second guessing does little good, because there are no do-overs; at this point, it is a chronic disease that one can only hope to contain.
Thanks be to God, there are numerous medications available that help contain the disease if it is diagnosed and treated early. Everything from injections, pills, and infusions has been created by pharmaceutical companies to help slow the progression of the disease by lengthening the span between attacks. There are also some promising regenerative medications (Anti-lingo, still in clinical trials) that may help the body repair the damage already done to the CNS. While twenty years ago, Multiple Sclerosis was nearly certain to send one into a wheelchair; now, it is only a possible consequence of the disease.
So, how is Multiple Sclerosis treating me? For a chronic disease, I suppose okay. After moving in on March 4, 2014 I have struggled to keep the disruptive roommate locked up and in the basement. I am still searching for my drug of choice to contain the disease, but I have hope that Rituximab, the strongest and most effective medication available, will do the trick (first infusion scheduled 6.8.15, rescheduled 6.19.15). If Rituximab fails me, I will look to have HSCT performed (Dr. Burt, Northwestern) which has shown early signs of halting the disease long-term in some people. I have numerous hidden symptoms (don’t worry, I will spare you for now), but as of today my brain has been largely spared which allows me to function at a relatively high level. Yet I Trust.
I think of you and your family often. Although you are not near us physically anymore, I still pray for you all that you find a medicine that works for you, to allow you to live a long, active life with those beautiful children. Continue to trust and never give up!
Thanks for the kind words. I hope this new treatment (Rituxan) will do the trick, but only time will tell. Patience is key, but I am tired of waiting! haha. Julia sends her love.
—, I am so sorry to hear that you have Multiple Sclerosis. I am a great believer of reading and I read two books a week. The book I am reading now is called Rush of Heaven by Ema McKinley with Cheryl Ricker. I cannot put this book down, for as this woman goes through some horrible experiences she will have an encounter with Jesus. She, too, has an illness. I know your family and their strong faith. God will test our faith in our lifetime and he has tested mine a few times also. I am Nancy Dorin, —- is my niece, so you probably remember me. Since you are a Pastor, I do not have to tell you anything about trusting the Lord, I will only re-assure you, that God has a plan we do not understand, but he never leaves us, and is always with us. May God bless you, and your family and keep you strong as you travel this path with the Lord Jesus by your side. My prayers are with you.
Nancy, Thanks for encouraging words. I do remember you, and you have a great niece 🙂 I appreciate your prayers very much!
I HEARD ABOUT YOUR MS THROUGH —- AND —- AND I WILL KEEP YOU AND YOUR TREATMENT IN PRAYERS. I HAD A CO-WORKER THAT DEALT WITH MS FOR MANY YEARS AND HIS MEDS WERE PRETTY EXPENSIVE. HE HAD A COUPLE OF STROKES BEFORE I RETIRED,(APRIL 2024), AND I HAVEN’T HEARD VERY MUCH ABOUT HIM SINCE. I DON’T KNOW IF THE STROKES WERE RELATED TO HIS MS OR NOT. THE MEDICAL COMMUNITY HAS COME A LONG WAY SINCE TERRY WAS DIAGNOSED AND HOPEFULLY WILL CONTINUE THE RESEARCH. I AM THANKFUL THAT YOU ARE SHARING YOUR MALADY WITH OTHERS… KNOWLEDGE IS A KEY. I WAS DIAGNOSED WITH DEPRESSION BACK IN THE 80’S AND I’VE NEVER BEEN ASHAMED OR BACKWARD IN EXPLAINING IT OR SHARING TO OTHERS ABOUT IT BECAUSE SOMEONE MAY BE SUFFERING IN SILENCE AND ONE NEVER KNOWS WHEN OUR WORDS CAN HELP ANOTHER. I AM SORRY THAT YOU HAVE ACQUIRED THIS SO EARLY IN YOUR LIFE WITH ALL THE RESPONSIBILITES THAT YOU HAVE…. BUT GOD WILL SEE YOU THROUGH. I KNOW YOU WILL KEEP THE FAITH AND STAY STRONG AND “LET” GOD TAKE CARE OF YOU. PRAYERS FOR JULIA AND THE CHILDREN AS WELL. IN CHRISTIAN LOVE, BONNIE M.
Bonita, Thanks for the kind words! I am sorry to hear about your diagnosis, but you have done a great job carrying on and remaining faithful to God. Sharing my diagnosis wasn’t an easy decision for me but ultimately I concluded exactly what you concluded long ago, if I do share with others maybe I can make the most of this terrible disease and circumstance. I appreciate your prayers they are tremendously helpful (James 5:16). God bless.
I was so excited to find your site! Your wife posted a link to it on another blog. My husband was diagnosed in 2016, after an 11-year off-and-on battle with this “invisible” disease. He’s a strong man of God, and his faith certainly impresses me and gives me hope. Sadly, MS has affected him cognitively, more than anything, as well as gait, imbalance, and coordination. We are both involved, and have been active for some time, in local missions, and he has never given up hope that God will continue to use him to minister to others. My husband is a permanent resident from another country, and recently made the comment, “of all the Christian commentaries and sites in the US, no one wants to talk about chronic illness – as if having a chronic illness is somehow not associated with true faith!” Looking forward to reading and interacting more on your site. God bless!
Hello my name is Percy, I was diagnosed with MS five years ago. I was recently informed by my neurologist that I have remitting MS. I am encouraged by this Websight for believers as well as suffering people with all types of illness. Please keep up the good work of sharing your faith and encouraging others through this medium. In HIM who supplies all things.