MS Diagnosis What to Expect
My MS diagnosis - the conclusion
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For the past couple of posts I’ve been recounting the week of my diagnosis of multiple sclerosis back in 2001. I appreciate your kind comments, and I hope that even those of you that were diagnosed a long time ago still find this recollection at very least entertaining, if not helpful.
When I stopped on Wednesday, I was making my way out of my first MRI…
At that time, I didn’t know a whole lot about the protocol of the medical world (that’s an education I would have gladly gone without). I peeked into the NASA-like control room of the MRI and saw what I assumed were green/white images of my head and neck on a large, flat computer screen. I know I searched to the fullness of my capacity in the mere glance or two I could steal while flirting with the MRI tech (yes, I was still Trevis…). I saw nothing.
I was told that the radiologist was still on duty that evening and would be reading them directly. However, I would have to wait until the next day’s follow-up with my primary care physician (PCP) for any information. This just wasn’t going to sit with me for the night.
I was a busy man. I had appointments to keep. I was “the Chef!” When I placed an order to my line, I expected an answer back and a dish when I said so! I was resolved not to leave without an answer. I now feel a little bit sorry for the young radiology resident who had duty that night.
I dressed slowly. It was by design that I did so, but I’ll also admit that a left side being less cooperative than a camel on a tightrope assuredly elongated the process. The dressing/waiting areas of this particular facility were close enough to the open office door of the doc-on-duty that I could hear him say my doctor’s name and my name on the phone. My eyes met my wife’s and I think I actually stretched my head, neck and ear out the door toward the office.
You must know that with a large ego and persona comes large responsibility. I know I have the ability to physically and intellectually bully a (deserving) opponent. I don’t use this ability often. However, that night, this man was backed into his office and “forced” to say the words he wanted my doctor to relay.
“Might be,” “could be,” “appears to be,” “more tests,” “Blah, blah, blah… Non-Hodgkin’s lymphoma or multiple sclerosis.” Note to self: Be careful, Chef Trevis, what you ask people to reveal. It may not be what you want to hear.
The following hours were like none I had ever experienced (but have since). I spent hours scouring the Internet for information about MS. The only thing I found that was consistent in my search was that MS was not fatal. Everything else about MS seemed to be possible. I could end up in a wheel chair, a hospital bed, blind, effectively mute, a financial burden. It wasn’t looking good.
The next morning had us back at the doctor’s office for the “official” findings from the radiologist. From there I was sent (the next day) to a neurologist about 30 minutes from my home for confirmation and a spinal tap (that’s a story for another blog) and my first infusion of steroids.
The rest of this story seems less poignant as I look back, save this. By the end of the week, I was spent. I was sleeping 14 plus hours a day and could still only muster enough energy to pee before needing a nap. My assistant was covering for me at work, but I knew that wouldn’t last long. I needed to get all of this off my mind, but how?
The answer came in a call from a friend, Dianne. We met for coffee in a little shop in the ground floor of my building. She was undergoing chemo for a virulent stomach cancer (one that would kill her within the year) and I was in the midst of my course of solumedrol. Sitting, heplocks in our hands and chatting over coffee, I realized that my life, our lives, were forever changed.
I have acquired much knowledge since that week seven years ago. I have relapsed and recovered; I have slipped, slid and “progressed” with this disease. I have learned much in my search for answers; mostly I’ve learned what we don’t know. But nothing I’ve learned has been more true than the observation with Dianne at Tony’s Coffee...my life has forever changed.
Wishing you and your family the best of health.
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