Moving Pieces Coming Together…

Such a busy month here with PT, doctor visits, and practicing my patience (does that ever get better) while awaiting “3-4 weeks” to receive the results from my recent blood work. My “Now Whats” were literally hinged upon these results as we decide the next treatment for my MS progression.

Week four and still no call with results.  As the early evening approached, it was break time (that’s right, time to kick back and give the body a rest) and catch up with the daily news when my phone began to ring. The caller ID read, “David Jones, MD.” This was it, I thought.  The blood work results are finally in.  I quickly grabbed my list of questions (which I’ve been carrying with me everywhere), took a deep breath, and answered the phone. We exchanged cordial greetings before cutting the the chase, his findings.

“Based on the results, you’ve been exposed to the JC virus.”  An important piece of information when considering the magnitude of risk for his drug of choice, Tysabri.  He explained, ideally, you don’t want to see JC virus exposure.  My test result was minimal at .75. High risk range is .9 – 1.6.  Therefore, I have a 1-10,000 chance of developing PML (progressive multifocal leukoencephalopathy).  Translation, brain suffocation or death. We certainly did not expect these results and thought our decision was easy, NO! Dr. Jones thought differently.  Let the dialogue begin.

Following several phone calls, lots of questions and conversations, it became clear this was what I needed to do.  Hard to believe we would even consider such a treatment, don’t you think?

JonesDavid

David E. Jones, MD University of Virginia

Dr. Jones shared:

  • He was concerned about the my recent relapse and progression seen on my spinal MRIs in comparison to previous studies

  • He was surprised to see me in a wheelchair when entering the examine room

  • He felt the risk was worth taking.  If not, I could still develop the same results with disease progression

  • If I was his family member, he would recommend the same treatment

Compelling case.  He outlined his plan of action:

  • will be followed by his colleague here in PA

  • I will be assigned to an infusion center that specializes in the infusion of Tysabri, complete with two MDs on staff to monitor my care and status  

  • I will have frequent blood work and MRI protocols to ensure the virus, brain, and spine remain within safe limits

  • I will alternate follow-up appointments every three months between him and PA neuro.  In the meantime, he will be in contact with the medical team here in PA

  • “I’m one phone call away for any questions or concerns from you or the medical team.”

I believe this huge decision could only be made with complete trust in Dr. Jones. For nearly ten years I was privileged to have him as my MS neurologist, as well as, being paired with him for patient education programs through work.  We got to know him on a personal level. Coincidence, I don’t think so.  God knew what He was doing all along. That’s a beautiful thing!

And so, all the necessary paperwork, labs, and coordination of care are underway. Within ten to fourteen days, my first infusion should begin.

From my heart, please remember my blog is solely to share my personal experiences, thoughts, and ideas. It is not my intent for readers to feel uncomfortable, troubled or even scared with the unpredictable realities I face with MS.  I encourage you to reach out to your medical team with questions and concerns you may have. Together, you too can make good, educated, decisions to be the very best you can be!

Be well and make it a great day!

“Count Your Blessings”

 

 

 

 

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14 Comments

  1. I will be praying for you! It is so good to have a doc you really can trust!

    • We know that to be oh so true! Hope you’re doing well. We need to catch up! 🙂

    • You the importance of a good doc so well GF! Love ya!

  2. No one ever promised us an easy life. Sometimes the challenges seem to be more than we can handle but you have the strength and the supports to go far.

    • Thank you for your kind words! 🙂 The beauty with blogging, the ability to meet amazing and inspiring people…you!

      • Thanks my friend! The feeling is mutual!

  3. May it go well for you. Hugs.

    • Thank you! Hugs right back. We need to catch up! 🙂

  4. I will be thinking and praying for you Catherine….. I know your faith will be your strength.. along of course your family… Diane ❤

    • Thank you Diane! Hope all is well in your neck of the woods! Looking forward to catching up with your blog! 🙂

      • I’ve been kind of light on posting the last few months… anyway.. take care of yourself ! Diane

      • 🙂 You too Diane!

  5. Your desire Cath not to worry us when sharing about your MS, shows a very Loving and caring heart, Thank you.

    I would love to know more about your Childhood and Family Cath, if you have a Link to a Post about them could you please share it with me.

    Keeping you in Prayer – Christian Love and Blessings – Anne.

  6. My thoughts are with you.

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