At age 40 he experienced his first traumatic multiple sclerosis (MS) symptom – or exacerbation. It was revealed in the form of a swift onset of a numbness-like sensation on the left side of his head and face. 1
Something was wrong and he was more than mildly concerned. What was happening to him? Over the course of that weekend, he racked his brain intently searching for an explanation. Was it the weed killer he sprayed on their property that week? Was it because as a pre-teen he rode his bicycle behind the truck-mounted fogging unit that spewed insecticide to kill mosquitos?
He went to his family doctor that Monday who examined him then stated “Among several possibilities, you might have MS.” The doctor referred him to a neurologist accompanied by a clinical description of the symptom; “Facial tingling sensation. Neuropathy of L trigeminal nerve, ophthalmic maxillary branches.”
He was puzzled and mildly irritated. What in the world did that mean?!
He had been probed by MRIs yet it was not until he was 46 that a neurologist finally declared “. . . a diagnosis of MS seems most likely.” This news was not delivered to him face-to-face. It came in a letter.
Somewhat shaken but not stunned, he decided he needed a neurologist with a better bedside manner.
He continued to work while enduring the “minor” challenges of MS including dizziness (vertigo), balance issues, vision issues, profound fatigue, dexterity issues, suspected gout, periodic excruciating difficulty swallowing, and more. Yes more. An unlimited variety. Most of the time he could only approximate a description of what he was experiencing. It was stressful trying to explain most of the symptoms in a way others could understand. The symptoms seem to defy an exacting description.
Eventually he experienced the inevitable exacerbation he could not disguise. He had visible weakness in his right leg. It was bad enough that he began to use a cane. A nice wooden cane, not a therapeutic-style cane like the one used by the dad, Marty Crane, on the old sitcom “Frasier.” 2 But he was able to keep working.
By age 55, MS had taken unshakable control. The symptoms were seriously impacting his job performance and often putting him in physical danger. Being sensible, he requested his doctor perform a Functional Capacities Evaluation (FCE.) Sadly, the results discouraged his continued employment and soon after, he went on short-term disability for six months. This was immediately followed by unchallenged long-term disability. His MS continued to worsen. The symptoms would cycle through getting “better” and worse. All the while new symptoms would appear. Humans generally adapt to the conditions presented and although difficult, he learned to work around whatever happened.
At one point, his personality drastically changed. It was something he had not recognized at first and was woefully unprepared to cope with this side journey. Was this a symptom of MS? It was bizarre to him. He spent his entire life being friendly and easy-going: the guy who rarely got upset who stopped fights, not started them. Yet, without warning, he found he became easily agitated with little, if any, compunction about confronting and challenging people. He was virtually unable to stifle his inappropriate responses to even minor irritations – although he tried. Moreover, he seemed to foster hostility.
During this time he also had trouble concluding a conversation until long after it should have ended. It was just another facet of MS’s impact. The control MS sometimes has on personality is too often downplayed or dismissed by medical professionals, counselors, friends, family and other lay people.
In the MS Foundation webpage article, “Cognitive Deficits in Multiple Sclerosis,” there is this on-target description regarding what he experienced.3
The fact is “. . . people who have MS may have the . . . problem of being unable to stop themselves. They may be very talkative and uninhibited, blurting out comments they would have kept to themselves in the past. . . . they seem very impulsive and oblivious to the reactions of others. Furthermore, they may have a ‘short fuse’ and experience unpredictable angry outbursts.”
There is little, if any, doubt in mind that the above story will resonate with the majority of people diagnosed with multiple sclerosis. A sad reality and twist of fate.
1 See National Multiple Sclerosis Society MS Symptoms
2 Retired Detective Martin “Marty” Crane was a character played by actor John Mahoney in the sitcom, Frasier. Marty had been shot in the hip after interrupting a robbery attempt. The injury forced him to retire and use a quad-point (four legged) cane as a result.
3 See the article “Cognitive Deficits in Multiple Sclerosis” By Jennie Q. Lou, MD, MSc, OTR/L, Carolyn Tischenkel, Lindsey DeLange, BS. Published on the Multiple Sclerosis Foundation webpage regarding Coping with Multiple Sclerosis.