Wednesday, September 28, 2011


When I last left you, I had just gotten under the care of Dr. “A,” who was supposed to be the best of the best.  I wanted and deserved the best of the best, didn’t I?  What I learned, unfortunately, was that reputation does not necessarily translate to superior medical care.  To be honest, I didn’t really have a clear perspective on what made a good or bad doctor. I hadn’t been to a doctor since I had needed a pediatrician (for mono and many of us now know about the connection between mono and MS).  So I went to Dr. “A” for a few years and it was fine.  I was progressing very gradually, still ambulatory.  And yet Dr. “A” put me on Linomide as part of a study.
Screeech!  Hold the phone!  At this point last week, while I was writing this blog, I was struck by yet another in a long series of medical events that are effects of the disease but not a manifestation of the disease itself.  I had inexplicably been running low fevers for a few days. My wife had accompanied me to the ER in our neighborhood on the first night to nip what we thought could be an infection in the bud, but the doctors had found nothing.  Two days later we went back: my above-and-beyond-the-call-of-duty wife had examined my nether region that I told her had been a little “strange” and discovered a “red sore the size of a baseball.”  So we went back to the ER and this time they diagnosed an abscess on my bottom, the result of sitting on it all the time (dammit).  The abscess had been causing the fevers and altogether draining my energy. To our relief, I was discharged very late Wednesday night. We were incredibly happy that I did not have to stay in the hospital.
Little did I know.  So I was discharged and put on a regimen of antibiotics that unbeknownst to me would wreck my digestive system for the next four days. I will spare you the details, but a different woman than my darling Alida would have left me after the agonizing weekend we barely survived. Now remember, this was not the MS but rather a side effect of the disease.  When I went to a doctor for a follow-up on Monday and told him about the bowel problems, he said something along the lines of “Well, you can get an over-the-counter remedy,” which I did immediately. Problem solved. Why couldn’t the ER doctor have mentioned that? It would have spared us a tremendous amount of pain and suffering.
This all brought to mind a song I discovered when I was going through a particularly difficult drug-adjustment period roughly a dozen years ago: The Verve’s “The Drugs Don’t Work” (see link below):
                The drugs don’t work
                They just make it worse
                And I hope I see your face again
The antibiotics are finally having a positive effect, but, man, for a few days they sure made me feel worse. The line in the Verve song about seeing your face again is the singer’s way of saying, I just want things to be the way they were, before all these side effects of side effects kicked in, when I can appreciate the beauty in life rather than feeling as though I was barely clinging to it.
I’m happy to say I’m getting better and feeling stronger every day, but it’s been a rough ride. I will not be defeated and will return soon to share with you more about the doctors and me and life with MS in the Big City. 

Until then,
Stay Gold,

Wednesday, September 7, 2011


Everyone has their own story about how and when they were diagnosed with multiple sclerosis and the subsequent turmoil that ensued. Like the disease itself, the process of diagnosis can vary wildly, taking from days to months to many years. Some people are convinced they have MS, but a doctor has never told them for sure. This is my story. Taking a title from a classic spaghetti western, you could call it “the good, the bad, and the ugly.”

I was diagnosed with MS more than 21 years ago. I had been experiencing numbness in my right pinky and right leg. At first I attributed these symptoms to over-doing it at the gym, but after a few weeks with no improvement, I made an appointment with the family GP in the town near New York City where I grew up.  I was 25 and hadn’t had a reason to go to the doctor since I was a teenager. He prescribed an MRI, which I endured a few days later, the first in what would become a long series of being stuck in a tube with the noise of what seemed like loud clanging of pots and pans right next to my head. 

I’ll never forget the day the doctor called me at work to tell me the results: "You have either Lyme disease or multiple sclerosis."  Just like that, over the phone.  Not: “Why don't you come to my office so we can go over the results.” What an insensitive asshole. And somehow I knew: it wasn't “either or.” I had multiple sclerosis. Like the days when John Lennon and Elvis Presley died or when I met the love of my life, this moment was forever locked in my brain.

All I heard the doctor say was “MS.” Immediately, visions of wheelchairs and walk-a-thons and bike-a-thons floated through my brain. And I burst into tears, bawling like a baby, feeling fear and hopelessness I had never experienced before. After the initial shock, I met with a neurologist who confirmed the MS diagnosis. Then I moved on to a lovely MS specialist from Australia who wanted to put me on a brand-new MS drug called Betaseron, which was the first medication created for the sole purpose of treating the disease.  Not a cure, mind you, but a way to slow the damn thing down. 

However, taking Betaseron meant three weekly injections and since my symptoms had gone away and I felt like my old self again, it was difficult for me to bear the prospect of injecting myself so often. Besides, the MS doctor told me I had a “relapsing-remitting” form of the disease that would remain that way for the foreseeable future. According to her, I was going to live a happy, normal life, and the disease would not interfere with any day-to-day activities. And she thought the way research was headed, there would be a cure in about 10 years, making it harder still to contemplate needles. Looking back on her analysis, I have to laugh: 10 years, 10 years.  If only it were true.

After a number of fits and starts, I ultimately made my way to one of the premier MS specialists in New York City. As these things go, he had come highly recommended from a friend of a friend who knew someone who had MS. What can I say about this doctor except that he was one of the best-known researchers in the city with one of the worst bedside manners I’ve come across in my entire life. If I could just get back all the hours I spent waiting in his waiting room, I could take a vacation or do something more useful with my time. As it was, the time I spent under Dr. A’s “care” was some of the most horrific of my life. But I lived to tell the tale, more of which I will share with you next time in “MS in the Big City.”

Have a great week.  
Stay cool,