Multiple Sclerosis - Intrusion Named
Jun 25 '02 (Updated Jun 27 '02)
The Bottom Line What tomorrow brings is uncertain for all. My uncertainty has a name. It is Multiple Sclerosis.
Intrusion Premier
Part One
A Whisper of ‘Multiple Sclerosis’
During life we experience medical symptoms, sometimes these provide clues for a defined diagnosis, at other times only subtle clues toward the cause of ailment is evident. Unfortunately the later was my fate during late spring of 1997. Plagued with sinusitis, allergies, and various other minor medical issues, I had become sensitized to the reoccurring doctor visits. Occasionally the symptoms varied, but generally the culprit was traced to sinusitis. This latest bout of illness confused me. Symptoms included fatigue, tingling in the arms, mild weakness in the legs, occasional blurred vision, slightly impaired balance at moments, and other minor annoyances.
I scheduled what I expected to be a typical doctor check-up, expecting to receive a round of antibiotics and possibly a decongestant. But, this visit turned out to be far from typical. As the physician sat slightly skewed on his stool, raised an eyebrow, and took a casual deep breath, I knew something was amiss. I held great respect for our physician. We knew his family, and previously we had attended the same church. All of this helped me know that he wasn’t going to deliver the ‘normal’ speech.
Instead of the antibiotic prescription, he delivered referrals for an array of blood tests, a MRI, and visits to a Neurologist. He informed me not to be overly concerned. But *yes that wonderful sigh and stall* there was reason to suspect MS – Multiple Sclerosis. To be proactive he wanted in-depth examination. Talk about a blow! Not his wording, but the realization that my life could be changed with this mere whisper of chronic illness.
Previously my knowledge about Multiple Sclerosis was limited, and fairly bleak. Naturally my normal positive disposition felt as though it had received a punch to the gut. I was determined to hold together for the sake of my husband and children (6 & 2). My first venture toward educating myself came from an outdated medical book, positioned within our home library. Talk about disillusioned; this information even mentioned death! Thankfully I ventured to the library, which offered a wealth of up-to-date publications, and a much brighter outlook. Unfortunately we lacked Internet access, nor did I realize the wealth of information it would offer. It was later ventures via Internet that proved most beneficial.
The initial MRI exam arrived. A close friend of mine drove me. The conversation was mild. She was clearly puzzled, as was I. My stomach churned, and my head ached. Questions turned fast within my thoughts and went mostly unanswered. Although I was nervous, the procedure went well. I was asked a battery of questions, spent approximately 45 minutes inside an enclosed tube for the process. Claustrophobic sums the enclosure, and incredibly noisy explains the audible intake. It literally sounded as though my head was in a tin can while a hammer was beating on the tin.
The next step was the initial visit to the Neurologist. Actually I was more nervous for this procedure than the MRI or blood work. I wanted answers, and thought they would be received that day. Little did I know that day would be merely the first of several doctor exams and just the beginning of a four-year travel toward diagnosis. Exam procedures were interesting, and an array of options unfolded. I was told that the MRI had showed a possibility of MS, but not a firm diagnosis. I didn’t feel comfortable about the lumbar-puncture suggestion but agreed to the evoked potential tests. So those were scheduled and I was forewarned that a lumbar puncture might be necessary in the future.
Dates of the evoked potential tests arrived, they had to be done on separate days. Pain was mild – when they scrapped a portion of my scalp to affix the electrodes. I remember the bizarre personality characteristics of the technician and the fairly obsolete rooms used for these procedures, bothering me more than the actual tests. These tests weren’t performed often; most physicians opted for the lumbar puncture. The test results were non-conclusive. My physician and I decided to take a wait-and-see attitude, but I was warned that early treatment is most important. Thoughts continued to ping, as I wondered if in fact I had MS.
Intrusion Intensifies
Part Two
Facial Paralysis and the Unavoidable Needles
Lingering in the back of my mind was the unavoidable ring of, “Early treatment is most important!” Thoughts of my decline to succumb to a lumbar puncture taunted me and knocked at the door of “should I” frequently, particularly when obscure symptoms crept into the scene. Sometimes I dismissed the weird symptoms, thinking I was more in tune to the many ailments sung from my body because of the MS suspicion wonder.
This wasn’t a situation I wanted to burden others with. As mom of two, wife to Kevin, Children’s Ministry Overseer, Early Childhood Educator, and Community Volunteer, I didn’t have time for this. There were many times that I felt so alone and as though I was on a trail of despair. Perhaps the situation seemed worse because on the outside I appeared normal (whatever normal is), and I made certain that my general demeanor depicted the normal healthy Lisa. Most of my life had been patterned by traits of overachievement, and I wasn’t about to stop that trend now.
One evening as I tucked my children into bed, prayed with them, and kissed my hubby prior to his departure for work (he worked graveyard shift then), my knees felt weak and I fell to the floor. I remember laying my head onto the coach, and the tears flowed. My cry that evening was to God. I begged for him to take the burden of “Is it MS… or isn’t it?” and to replace it with a spirit of peace.
During this phase of time my family and I were participants in a newer church plant. This was going well, and I was very involved in the start up of the children’s ministry. My husband – a drummer/percussionist – was devoted to the worship ministry and our children admired this new church home. Prayer had come my way for healing, but not wanting focus brought to myself, I hadn’t shared the inner thoughts that occasionally attempted to capture my peace. Some call it pride, I felt it was just not something I wanted to bother others with. Life appeared to be going good, and I had dismissed most thoughts of illness. I was allowing the possibility of MS to merely be a follow-up appointment with the Neurologist, which was written on my calendar.
Then one late spring day – during a shopping trip to Costco – I felt an excruciating pain at the point where my cheek meets my right ear. Directly after this painful moment, tingling overtook the right side of my face, my legs felt like weights of putty, and I felt slightly dizzy. After sharing this with my friend, we stopped at her father’s home to make a call to the physician. The on-call doctor (it was Saturday) felt it might be the start of bells palsy, and instructed me to wait till Monday morning to be seen.
The following day – Sunday a.m. – I was reluctant to go to church. However the overachiever in me knew there were duties to accomplish, and my spirit yearned for the comfort of fellow Christians. However pride presented embarrassment for the obvious facial disfigurement. I really felt as though I was walking in a foggy mist with no site of the future. Attending church was good; a group rallied around me in prayer and I literally felt God remove all burden from my shoulders. I was thankful for our faith system!
Monday arrived and my physician phoned the Neurologist. He agreed to an emergency visit. By this point of time – a couple days later – the right side of my lip was becoming numb. Upon examination he informed me a lumbar puncture was now unavoidable. I agreed, and the appointment was set for the next morning. Unfortunately the facial paralysis was much worse. He performed the exam, and admitted me for emergency IV steroid treatment. After putting in a stint for the IV’s and giving me the initial dosage, they discharged me – I would follow up with two more days of IV medicine visits. This treatment stopped the progression of the paralysis. The results of the lumbar puncture were inconclusive for MS. Days later, feeling started to return to my mouth and cheek. A few months later it was barely noticeable, and a year later only my Neurologist could tell. Thankfulness only begins to explain the feeling I maintained for recovery of facial use. Although the medical procedure was very painful, it was good to have certain ailments ruled out (cancer and such) but disheartening to endure the continual road of was it MS… or wasn’t it? Let the wait continue.
Silent Intrusion
Part Three
A Season of Time
During my senior year of high school we wrote predictions that were published in the yearbook. Mine stated:
“I will be happily married to Kevin, living in our cozy home with our two children.”
As high school sweethearts, we married, we have a cozy home, and we have two daughters. However if asked then to apply details to the roadmap, the similarities between prediction and reality would cease there. The innocence of young adulthood pretty much allowed rose tint glasses to stare into a star struck future, and determination fueled the desire to realize those early dreams.
This sets the groundwork toward me sharing with you that the roadmap of life dealt detours of chronic illness for our family. It clearly is determination that has allowed us to persevere through the phases of my multiple symptoms, fatigue, literal exhaustion, and confusion. Oh how all of that attempted to rob joy, and break apart our family unity.
Author Judith Lynn Nichols correctly nicknames MS the MonSter, and I highly recommend her book Women Living with Multiple Sclerosis. Her publication captures excellent insight of real women (from an online group) venturing through captivity of MS. Inspiration of freedom laces the 271 pages, and literally provided the early intervention toward my conquering of the beast that ailed me. Couple this with online support I received from Mousechews Online support, and various other websites, and I had the equitable weaponry to face the battle that knocked on my door.
During this longevity of “Is it MS… or isn’t it?” I had many doctor visits, multiple MRI’s and other medical procedures. Most of the symptoms were nuisances and pebbles that accumulated to boulder size, in attempt to break down my inner being. My fighting spirit clung to the surface, and I was determined to persevere. However during this course of time, some other medical issues came to surface, and had to be dealt with. It would be deceitful to not admit to mental exhaustion at times, and spiritual doubt on the rare occasion. Over the course of time I dealt with diagnosis of Fibromyalgia – sometimes a secondary ailment that occurs in patients with MS. I also was diagnosed with a severe case of Endometriosis and underwent a major hysterectomy.
All of these situations seasoned my trail, and allowed me to sort through overacheivement issues. I was clearly overcommited, and bankrupting my energy account. When all was piffled through I was able to relinquish unneeded commitments – not easily – and prioritize accordingly. Bottom of the line showed me what was really important in life:
My relationship with God
My relationship with my Husband
My Children.
In the midst of this adventure my neurology team – yes a team, I was a hard to diagnose case – had suggested endeavoring into writing. Thus explains my initial adoration for Epinions. Endeavors online allowed a momentary escape from the pains that ailed my body and the attempts of depression to overtake me. Reprioritizing worked in my favor. The medical ailments appeared to be improving, and I was benefiting from time management, and the realization of needed rest periods. I had moments. Er… good days and bad days, but overall wasn’t consumed with thoughts of “Is it MS… or isn’t it?” Such is life in undiagnosed land.
Intrusion Confirmation
Part Four
The Day I Found Out That My Brain Had Shrunk
Annual MRI’s showed only the initial small spots that the initial MRI reveled. Because the medical profession is not in the habit of taking a MRI, of every brain, for the mere heck of it, it is unknown how many ‘normal’ people have faults. A few spots aren’t conclusive of MS. Previously it hadn’t seemed appropriate to diagnose MS, and prescribe life long therapy. The frustrations of wait-and-see plagued me, I had annual MRI’s, and visits with the Neurologist. I can honestly say that I had nearly dismissed possibility of receiving a diagnosis of MS. After the hysterectomy to alleviate the severity of Endometriosis, I was feeling quite better. Recently some “symptoms” had occurred that were questionable, but I knew the scheduled recheck was approaching, and was optimistic the probable MS would remain in question.
This visit was routine. Correct? Well….
July 28, 2000
This was the day my Neurologist informed me that I do in fact have MS. The host of the unwelcome offenses to my body was now affixed a name. The possibility of this MonSterous presence was spoken year’s prior, as indicated above, but now a confirmation was adhered, and the diagnosis presented: Relapsing, Remitting Multiple Sclerosis. Decisions had to be made. Although I had thought at one point that I was ready to receive diagnosis, the reality stung and it was a shock. Time had allowed me to research the disease. The treatment choices were familiar. For that, I was thankful.
The word Atrophy was introduced into my MS vocabulary. The recent MRI showed Atrophy of the brain. My brain had shrunk. No, it wasn’t just a mommy joke of what sleep deprivation had caused. It was a reality. Added to the list of damage, was a clear finding of additional plaque spots within my brain. These facts contributed to a factual it is MS, it had been silently destroying, and it is time to face treatment!
My Millenium MRI.
Thinking back…
As I laid on the cold hard surface, receiving my sixth MRI, I had a feeling that something was different this time. This procedure was taking much longer then previous tests, more staff was present at the monitor, and I also noticed a remarkable sympathetic approach in how the team acted after completion.
I had temporarily dismissed the initial observations, and I had momentarily put aside the thoughts of what was found during the procedure. I knew that it would all be revealed to me on July 28th. Thinking back, my initial gut feeling was correct.
My Neurologist is a wonderful person, compassionate, yet professional. His office overlooks the bay. I like the fact that his practice is located in a quaint & unique, older home. Through this whole process I have trusted him, and been thankful to be in the care of a doctor who really cares.
On that bittersweet July day, as he put my MRI films up to the window (why use the bright and sterile viewing method, when this provides the patient with the calm background of the bay and such) I saw the marker marks on them. A sinking feeling in the pit of my stomach, and a flutter in my heart, prepared me for the words to come. It was different this time, and regardless of preparation, I felt so alone.
Calmly I listened…
He said the Radiologist was calling it MS. Atrophy of the brain was present at an extremely unusual rate for my age. There were more dymylentation spots and dawson fingers between the two brains (I later found out by an MS specialist that "dawson fingers" are a sure indicator of MS). I did laugh when I realized that my brain really was shrinking. I understood the seriousness of the situation, but was trying to make light of it. It struck me as funny, that yes my brain had shrunk. We sometimes joke about that occurring. You know how it is as a parent!
And, it has often helped me to see a bit of humor in what life hands me.
He completed his exam. Finding a weakening in my right side, and a few other symptoms. I was then instructed on the visits that would follow. He would be sending me to the Neurological Institute in Seattle, for a supporting opinion with regard to medicine choices. I would also be seeing some various other specialists. Mostly with regard to decreased hearing and sight challenges. All of these visits were beneficial in assessing the approach to be taken. It has been proven that if treated as soon as possible, there is a strong chance MS will be halted or at least slowed down. Especially in relapsing remitting MS. There is no cure, yet. However, there are medications that have shown promise in preventing MS from entering into debilitating stages.
September 1st approached and I visited the MS specialist in Seattle. Diagnosis was confirmed and medical therapy chosen. No one could predict what path this invasive robber would take, but I was determined to live life to its fullest. As a Young Woman, Wife, and Mother of two, I knew the need to captivate determination and persevere. I refused to be backed into a corner. I no longer could entertain the possibility of whether it was true. We now have a name for what was/is devouring my body. To date it had created lots of annoyances. But there was no road map for this MyStery disease. Together the team of physicians and I achieved a daily shot therapy combined with 5 oral medications. This mix would become routine in hope of halting future intrusions.
Another wonderful attribute during this trying time was the friendships developed at the Nest. Audrey and fellow moderators lifted me from some of the deepest moments of despair. I am thankful for that, and appreciative of the online community that she, and the others are devoted to.
http://pub107.ezboard.com/bbluehawqsnest
What tomorrow brings is uncertain for all. My uncertainty has a name. It is Multiple Sclerosis. It can be a MonSter. Each day can bring a new symptom. I do have weaponry. Excellent physicians are on my case. Research is ongoing. Medications are available – not as a cure – as a possibility of hindering the invasion. I know that the Lord will not hand me more then I can handle. My biggest inspiration to battle this is my darling husband and two incredible daughters. A great source of support is our faith, family, & friends.
Over the course of this long journey some wonderful things have occurred. I have really learned what is important in life. I have laid down over-commitment. Taking time to stop and smell the flowers is a wonderful life lesson. Many look back and say if only….
I look at today and see how the relationship with my husband, girls, family, friends and the Lord has increased because life has forced me to realize what is really important.
Please don’t take life for granted. One really doesn’t know what tomorrow brings. Nor does one really know what ails another person. Sometimes I forget the lessons learned along this path, occasional anal – overacheiving mannerisms attempt to reencompass. It is at that point that life smacks me in the face, humbles me, and allows me to remember. Today is precious. Tomorrow isn’t promised.
~*~ ~*~ ~*~ ~*~
I am nearing the two-year mark of receiving daily shots of Copaxone. My last MRI showed no additional damage in the brain region – this is a good thing, especially at the one-year mark. I will continue daily shots, 5 oral medicines, and bi-annual Neurology visits.
If you have any questions, please email. It is my desire that this will serve a dose of hope to someone.
For more information please visit:
http://www.nmss.org./
The National Multiple Sclerosis Society
To receive a Free MS Take Action kit:
http://www.montelms.org/default.asp
© 2002
Lisa_J
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Rest in Peace Barbara, you are missed.....
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