Introductions and Welcome
 
Posted: 15 February 2017 10:16 AM
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Welcome to this site and please take a moment to introduce yourself.

I am a 60 something nurse, wife of more than 40 years, mother to 2 daughters and grandmother to 4. Things that have given me great joy in my life are music (I am a professionally trained soprano and play several instruments), sewing (I have made most of my children's clothing as well as my own and had a sideline making bridal wear for friends and friends of friends) and travel.
I was diagnosed with "a mild form" of Relapsing Remitting MS in 1994 after 19 years of symptoms that came and went but was never put on medication at the time because I was still walking unaided after all that time. (Note: That was long before we knew that early treatment was imperative to better outcomes)

Seven years later, I was dependent on 2 canes and in a scooter. I switched Neurologists and got my first steroids (which actually helped!) and started on Avonex. For nearly 2 years I was on monthly steroids and Avonex but seemed to be worsening after about a year on that regimen so was switched to the higher dose of Rebif and saw a lot of peeling back of symptoms. I began to return to part time work as a consultant and life was good.

Flash forward another 7 years and after a month in India, I returned with a UTI that was not responsive to antibiotics and my MS was acting up as a result of the infection. After several months of treatment and finally getting the infection under control, my therapy was switched to an unconventional chemotherapy that had been in clinical trials prior to the introductions of the interferons and glatiramer Acetate. That kept me free of new symptoms for three years and then I had my first major relapse since 2003 and went on one of the first oral meds that had been released, did not tolerate it and went back on Rebif and did well for several more years. Now, in my 6th decade of life, after 40 years since first symptoms, I am still having relapses (2 in the past 18 months) but am beginning to progress so have been on Rituxan for a couple of years.

Life does not need to end with a diagnosis of MS. In fact, for me, it has become richer and fuller and new doors have been opened educationally and work for me. If something is not working for you, have that talk with your Neurologist or NP about how things might be tweaked for the better. It can have a tremendous impact on the quality and joy that life has to offer.
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