The unraveling of my “Now Whats” continued. This week, we ventured down to the University of Virginia to see Dr. David Jones. My long time MS Neurologist here at home until assuming his new role at UVA several years ago. I can still remember the day he told us about this big move! He was excited! He shared he would now be doing research, teaching the next generation of neurologist at the university, and clinically see patients. For years, I was privileged to work alongside him at patient education programs with my previous employer, MS LifeLines. He was the neuro, I was the patient living with this unpredictable disease. His passion for patients was always obvious. It was an easy decision for us to make the trek to see him and get honest feedback on my current status.
We planned to arrive in Virginia the day before our appointment for a well-deserved getaway. Hubby booked a place for us to stay at the Clifton Inn, a beautiful 100-acre gem in Orange, Virginia. Added bonus, he had a 40% off coupon with Expedia! Our room was just breathtaking. Once a horse stable, now beautifully converted into warm and comfortable guest room, complete with a fireplace and a deck overlooking the lake. Hospitality didn’t skip a beat as we were greeted with freshly brewed hot tea and cookies! As you can imagine, I couldn’t stop smiling! The next morning, we explored the property (owned by Thomas Jefferson’s daughter in the late 1700’s). Gardens could be found throughout the entire property. They even had a veggie and flower garden specifically grown for the in house chef and inn arrangements. Interestingly, an electric fence was in place ready for unwelcome guests!
We quickly had breakfast and headed for my appointment. Hubby dropped me off at the main entrance. The volunteer was ready with his wheelchair and whisked me into the lobby while hubby parked the car. People were hustling everywhere as soothing music played overhead. I was pleasantly surprised to hear a piano version of “Our God is An Awesome God” throughout the lobby! Love that song! You know what that means…I began humming to the tune, then singing, when I noticed a woman sitting on the bench looking at me. Imagine that! I simply smiled and said hello! She stated, “I love that song and was glad to hear you do too!” The conversation continued! Are you ready…she was from Lynchburg, Virginia!!! What!?! We shared our connection to that area, Liberty University, where our now grown children went to college. The beauty of meeting people when out and about! Before I knew it, hubby came through the doors smiling and shaking his head. I quickly introduced him to my new-found friend, Ms. Aubrey, and shared our commonalities. Some things just don’t surprise him. He happily embraces my willingness to reach out in conversation to strangers! Love that man!
We proceeded to the 4th floor, registered, and were taken right back! Dr. Jones opened the door with, “there’s my rock star!” “I just received an email with a quote you recently made.” Long story short, a new organization had been established, SpasticityAlliance. I loved the education and information this site provided and had to send an email telling them so. Dr. Jones apparently was on their MS Medical Advisory Committee who reviews emails received. There you have it…explanation for his comment to me.
He spent 1.5 hours with us listening to our concerns, answering our questions, reviewing new MRIs and educating us on his recommendations and options. The MRIs of the spine are ugly. He shared his thoughts for treatments in light of my recent flare. Namely, several big guns: Tysabri, Gilenya, Lemtrada, and Rituximab. These all have the usual side effects plus significant risks (including death) involved. To lessen the possibility of these risks, extensive blood work is done to see if I’m a potential carrier to develop specific viruses, conditions, etc. Of course, the gamete of emotions flooded our minds. We were, quite frankly, petrified. The results should arrive in about three weeks making our decision on how to proceed clearer.
In the meantime, we are researching the top four choices. Certainly, these are not a cure or will repair the damage done, but statistically may improve and/or stop progression of disability at this juncture.
Needless to say, prayer chain alerts are out specifically for strength and openness to make good, educated decisions for treatment. Remembering, with Him, we can do this, allowing His plan to be revealed!
Know I will continue to work hard to be optimal and will never give up! I am blessed in so many ways!
All information discussed and blogged on So I Have MS…Now What? represents my personal experiences and opinions only. It's my recommendation, should you have any questions or concerns, to contact your neurologist or physician to discuss what is best for you. Please note, I am not financially compensated by any company or manufacture. My sincere thanks to Motion Therapeutics for helping this non-technological MSer set up this blog! Have a blessed day!