My journey with Primary Progressive MS

Over the course of more than a decade, I had been complaining to my doctors of periods of utter and complete exhaustion; fatigue that made my legs feel like concrete posts and filled my brain solely with fantasies of sleeping. The parade of doctor ordered blood tests, urine samples, EKGs, sleep studies and no plausible reason was ever found for the lassitude. At one point, I suggested to a physician that I might be suffering from MS. He laughed and said, "No, you're NOT suffering from MS," making me feel like an hysterical hypochrondriac. Yet another doctor suggested I go on the Beverly Hills diet, despite the fact that I was 155 pounds and six feet tall, several others would not look further than depression as the cause. Sound familiar?

Finally, about three years ago, I demanded my newest doctor order an MRI and he reluctantly agreed. To everyone's surprise but my own, there were MS lesions throughout my brain. I then went to a neurologist and took visual screening test that confirmed optic neuritis. Many friends thought it odd that I was happily relieved after the diagnosis rather than devastated, but only someone who has struggled so long for a diagnosis, an answer, validation, could understand. At least I knew what was happening and why.

For me, fatigue continues to be the most debilitating symptom. At times, I feel like I have run a marathon, pulled an all nighter, drank a bottle of whiskey and climbed the stairs of the Empire State Building on my knees. I take two antidepressants and Nuvigil, and it allows me to restrict my naps to twice a day. If I have to work for several hours straight, I sleep for much of the remainder of the day. I often say it feels as if I am a car with a seriously leaking gas tank.....just can't get very far on what should be a full tank!

As the wood is whittled a bit more each day, my right lower leg and foot are numb all the time, I walk like I am stoned at times, and I went from urinating twice a day to once every half hour. My biggest wish is that researchers stop putting all their time and money into helping MS suffers reduce their relapses by 5 percent, walk 7 percent faster or minimally slow down progression of lesions. Please, develop a pill or a therapy that restores our energy! With stamina, we can meet the challenges of life with much greater determination.

For those well meaning folks who have told me to embrace my MS as part of who I am, I say baloney. I can hate and resent MS, be jealous at times of others who aren't as limited, without becoming pessimistic and dour. I am human, not a saint. Living with a disability closes some doors, but I have learned that many are still open. There is much to learn and much to do. MS can't defeat you unless you allow it to.

Sharing stories with other MS sufferers has made a huge difference to me....I haven't felt as isolated, misunderstood or unique. As a result, I want to play it forward and hope my story may makes someone else feel a little less afraid.

Ed