What have I learned with my MS?
From an early age, there always seemed to be health issues that were often common but also semi-covers for underlying conditions.
Since being diagnosed with RRMS (Relapsing-Remitting Multiple Sclerosis) in June 2020, I have been involved with a gigantic jigsaw puzzle of matching pieces together to make sense of and see the entire picture of the past 50+ years. I must say, that despite the physical issues involved, it has been a fantastic journey exploring the past.
When I was two and three years of age, I experienced enormously high fevers, and Mother, upon the doctor’s instructions, gave me alcohol and ice baths. She feared I might go into convulsions as my fevers would get as high as 105 and 106. Fortunately, she and I were both spared those horrors. Just before I turned four years old, Mother began noticing different symptoms. Anemia was one issue and for quite some time I was pale and drawn in appearance. But the fevers and some of those symptoms took a different turn.
From age two, I was plagued with strep throat and ear infections. One physician now believes I may have suffered from some autoimmune inner ear disease, or possibly from Meniere’s Disease which caused permanent deafness in my right ear. Had it not been for the stern advocacy of Mother and Dr. Walter Wirth, I was almost placed in special education for kindergarten at Washington Elementary School.
In August 1968, I was diagnosed with rheumatic fever which was quite rare in children under eight years of age. That September, I was sent to Methodist Hospital in Indianapolis for a meatotomy to be performed by Dr. William Wishard, MD, Jr., whose father founded the urology department. The day after a birthday party held in my honor by Ruth Lyons’ Christmas Fund, I was released back home to recover from pneumonia. Two months later, the Monday before Thanksgiving, my surgery was completed, and I returned home to a Tonka dump truck and car carrier! I still remember those two items being rolled out by my Uncle Ron.
My second-grade teacher commented to Mother that she noticed I seemed to have some balance issues. When discussed with a specialist, my balance issues were attributed to not having a full range of hearing.
Through my teen years and into college, I either didn’t have any serious issues or I compensated for anything that arose, which has often been my MO, modus operandi, throughout life.
At age twenty-two, I began noticing tremendous energy deficiencies and my doctor in Muncie, Indiana kept telling me I was burning the candle at both ends and needed to slow down. A few years before, Mother had remarried David Haas who was an engineer at BorgWarner in Muncie, and we frequented Butterfields at lunchtime. I mentioned my fatigue to Dad and he said I should seek another opinion. He discussed it with his secretary, Pat, and she recommended her doctor.
Dr. Robert Hunter was not dismissive of my symptoms and listened intently to what I described. A few weeks later, I received a call to come to see him. He sat on the edge of his desk and eagerly showed me several articles written by Dr. Charles Pelleginro describing something that was connected to Epstein-Barre but referred to as CFS, Chronic Fatigue Syndrome. Together, we arrived at a new health regimen after a lengthy series of tests, a lengthy but thorough process of elimination.
I learned that suspense novel author, Marilyn Sharp, the wife of Indiana Representative Phil Sharp, a native from my hometown of Elwood, Indiana who went to school with my parents, battled CFS. I contacted her and before long, I was attending events at which she spoke and championed those of us battling CFS. Thanks to Marilyn Sharp and Dr. Robert Hunter, I have glided through life without any major bedridden cycles.
I moved to Dayton, Ohio in August 1990 and shortly thereafter, began battling kidney infections, the result of urinary tract infections, commonly known as UTIs. Each of my doctors, clear up through 2010, diagnosed me with prostate infections. One nasty snip for a biopsy concluded there was no cancer, however, the prognosis was then termed, chronic prostatitis. I had entered the phase of life where I was in the “titis zone” with the prostate and sinuses.
There were times, between 1990 and 2020 when I struggled greatly with heavy fatigue but was often diagnosed with depression for which I was treated.
Around 2000, I began experiencing issues with my voice coming and going or dealing with hoarseness. My ENT concluded it was allergy related, especially from working on dusty stages while directing and performing. Now, we know that the RRMS is connected to dysphagia.
June 2020 opened the floodgates of new questions regarding previous health issues, and it felt as though different pieces of my health journey were being pieced together. The life-long health issues that seemed to have substantial reasons or explanations now appeared in a completely different light. Somehow, I began feeling normal inside because things were making sense.
It was the numbness and tingling in my feet and legs that led me to address the doctor with more concerns and that included continued balance and coordination problems, heat sensitivity, weakness and battling heavy fatigue, occasional double vision, occasional dizziness, pain, or shock or electrical waves running through my legs, stiff muscles despite daily walking or hiking, slight leg tremors and/or spasticity, crushing constriction around the chest or abdominal area (known as the “MS hug”), and minute bladder issues. A year ago, we added celiac disease as a potential item to the corporate list but researchers are still inconclusive or disagreeing with other researchers.
It wasn’t until a few weeks ago, when discussing our similar yet quite different symptoms with my sister, who has also been diagnosed with MS, that she mentioned the UTIs she was experiencing. Boom! Another item to the list. Until then, I had no idea bladder issues and UTIs were also connected to MS.
Multiple Sclerosis is not easy to detect or diagnose and the diagnoses I received for the various issues from childhood have always made sense. Was I misdiagnosed? I don’t think so. I have greatly trusted each healthcare provider and I had something that was difficult to diagnose.
Having RRMS is not something I would have placed on my list, but it has become a part of my journey and I can only keep going forward. Hopefully, by being open to sharing my experiences, someone else battling MS, or RRMS, might benefit or at least not feel so alone on their own journey.