About Me

  • Gender Male
  • Age 36
  • Relationship Divorced

My Story 0 Appreciate this

I moved from Vermont (where I grew up) to New York City (Brooklyn and now Manhattan) in 2013. I had always wanted to live here. I am now soon moving to Austin, Texas. I feel I have had my needed stay in NYC - and I am glad to be at peace with that. My first symptom, I now see as being the serious vertigo I faced at my first job in NYC. The symptom that led to me being diagnosed was a couple of months later where my right heel would no longer pick up - so I found myself sometimes dragging my foot while otherwise walking normally. I scheduled an appointment with a neurologist and saw them. It was very confusing. They had me do an MRI and did some assessment. Every time I went in, I was talking to a different person, whom often I was not even introduced to - so I could not speak on their expertise, just take them for whatever they say. One day a woman I presumed was a doctor sat me down in an office that I presume was hers, with diplomas on the wall that I assumed to be hers. She had me sit down and then said "So, Sean... we think you might have MS." I was skeptical to say the least. My symptom had disappeared by this time, and I had no reason to think I had something serious to deal with. My whole life I had been a white middle-class male and I was always fine. I was in my 20's for a whole 10 years (30 upon hearing her diagnosis of sorts). So, I left the office thinking "yeah okay whatever. MS my @$$." 6 months later, I was doing one of my favorite hobbies, going for a run around central park. My head started swimming a bit, and my eyes became unfocused. I had always had 20/20 vision. Now, my two eyes showed me different images, and they would not merge into one as normal. One was asymmetrical and no matter how I concentrated on fixing it (stopped running, stood on the side of the path and focused on resolving this so I could keep running without the fear of toppling over) it would not change. This time I said "okay well first things first, I have to rule out the ridiculous MS diagnosis" and I made an appointment with Dr. Charlson at NYU Langone Center for MS. Dr. Charlson is a kind, George Clooney in ER type, and his words to me were something along the lines of "Yeah it does sound like you have it". Damn, I thought - but was soon on the path of trying to get my insurance to pay for Gilenya. It took too long by everyone's standards for them to get through the process of telling me "no", and I started on the equally expensive Tecfidera. Oh god it was probably a year since I was first diagnosed and finally I was on a drug for it. Dr. Charlson has been great and when my roommate told me she was also diagnosed with "likely MS" I connected her to him immediately. On Monday I start my first infusion of Ocrevus, and I'm happy to no longer be taking a pill twice a day, rather have an infusion every 6 months (2 this first month, I think because I'm just starting). Anyway I am happy to help or share with anyone who could use it.

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