Back to Kansas

As much as I tried not to, I apparently brought some secret, unconscious expectations into my visit to the Multiple Sclerosis Research Center of New York, or The Tisch MS Research Center of New York, or The International Multiple Sclerosis Management Practice, last week. It was a great exercise for me to tell my entire MS story – or as much of it as I could remember – to someone who had not heard it, and to have that person be a neurologist entirely dedicated to MS. But I have to say that I was disappointed that, when we got around to talking about my current treatment regimen and Dr. Stark’s suggestions for different avenues to investigate, it seemed that the approach was still the “try this, it might work.” Granted they were avenues that had not been suggested by my own neurologist, but they were treatments that I had heard of. I knew that they would not be likely to offer me anything to make me “better,” but I apparently held some hope for at least a little of that, at least something that might relieve one or two symptoms. In the days after we got home, I felt a growing sense of loss that not only did I still have MS, but they were not able to offer me much hope that one day I might not, as unrealistic as that might have been.

Don’t get me wrong. It is a remarkable place, and I am very happy to have found a place that focuses all its resources on multiple sclerosis. They are involved in some exciting research – notably into stem cell treatments (which do hold out the hope of a possible cure someday in the future). They house a team of therapists, researchers and doctors who’s only concern is MS, and that makes me a little itchy to live closer to, if not actually in, New York so that I might be able to avail myself of their considerable resources. I am very appreciative of having had the opportunity to spend so much time with Dr. Stark, and to have him absorb and reflect on my story and to offer specific treatment suggestions. There was nothing revolutionary, but maybe what we came up with will turn out to be a more “effective” treatment, whatever that means.

It is unfortunate that there is no objective measure of that effectiveness. It all depends on the subjective, on my self-reporting how I’m feeling. And that can change depending on what day you ask. I look back over the time that I have been taking Cellcept, and I’m reasonably sure that the progression of MS in me has been slow (though whether or not that would have been it’s course regardless of treatment, who can say). Maybe switching to Tecfidera as Dr. Stark suggested will be an improvement. It certainly seems, from my layman’s perspective, a more targeted medication, more specific to MS than Cellcept. (My daughter takes Cellcept as an anti-rejection treatment for her heart transplant.) I’m not sure what that will look like, but I struggle to be optimistic. When my daughter needed extraordinary medical treatment, we felt blessed to have such easy access to Boston Children’s Hospital. In the same way, I feel blessed to have such easy access to a place like IMSMP.

I did love what little time I spent on the streets of Manhattan. Being out in the hustle-and-bustle of the Big City was wonderful, and I didn’t realize how much I’ve missed it over the last few years – even the quieter hustle-bustle of Portland. Dinner with my high-school pal Alan and his girlfriend Edie was a delight. But I am still weighing the value of those experiences against the 10+ hour round trip drive and the several hundred $$ the whole thing cost. I think in the end, I will come down on the side of well worth it.

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2 responses

  1. If there is one thing that the Internet does not do well is translate compassion. As we come out of another New England winter and shake the dust off of our tired bodies, it is heartening to know that your out there and ready to greet another warm sunny spring day.

    Peace be with you brother.

  2. Thanks for the info. I wish more meds were available to those of us who have secondary progressive ms.

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