Let the Journey Continue…
It was that time of year again for my annual visit at John Hopkins MS Center. I was scheduled to see a new neurologist who was assuming the patient load from my previous neurologist. He left to focus on research only. I had such mixed feelings about this appointment. I was excited, nervous and a bit scared about this visit and new doctor.
A dear friend and I were ready for the road trip. Hubby was feeling disappointed to miss this appointment. “Fear not…you’ve already taken plenty of time off for my appointments.” Besides, BFF had a recorder all set to tape the visit for him to listen to upon our return! That put him at ease! Me too! 🙂
We always saw the neurologist at John Hopkin’s satellite office in a little town of Lutherville, Maryland. What a nice drive that was. Now, let the venture to downtown Baltimore begin. Nothing by major interstates, traffic and more traffic. We finally were close to the actual building for my appointment. One problem, where was the entrance? We found ourselves circling the iron clad building. No entrance! Thank heavens for security. He pointed us in the right direction!
BFF dropped me off as we were late (imagine that!) I was not confident they would even see us. They have a policy allowing one to be 15 minutes late…50 was really pushing it. I was prepared to reschedule. When I gave my name, the young lady shared, “the doctor was running behind. She would check if I could still be seen. Would I mind waiting?” “Not at all!!!” She promptly returned and said, “Yes, she could see you!” With sheer excitement I shouted, “Praise the Lord!” She smiled and laughed! BFF had parked the car and we were now reunited and excited that this all was working out! Our three-hour trip was so worth the journey!
The neurologist came out, called my name, and took us back to the examining room. This was the first time I ever had a woman neurologist. She spent nearly an hour and a half with us reviewing my history, physical examine and making her recommendations. She also spoke to us about participating in their brand new clinical trial. Needless to say, system overload right here. I was grateful for BFF’s extra eyes and ears for me and the now cherished recording of the visit!
I was amazed with the amount of time she spent with us. She provided so much information for me to research and wrap my head around. Her findings included:
* Diagnosis – As suspected, I was indeed progressing onto SPMS (Secondary Progressive Multiple Sclerosis).
* Spasticity – This has been a daily symptom I strive to manage. Stretch, stretch and stretch some more throughout the day.I was taking Zanaflex to improve, however, she wanted me to switch to Baclofen. I just completed my titration to desired amount right now: 10 mg, 3x a day. My system has adjusted to this med – I no longer am in that comatose state! 🙂
* Strength – Back to PT (physical therapist) for eval and recommendations.
* Balance – Back to PT (physical therapist) for eval and weight adjustments for BalanceWear Vest.
* Hand Curl – I had no idea. Part of the physical examine revealed my hand was curling while eyes were closed. She believed this was at an early stage, see an OT (occupational therapist) for eval and recommendations.
* MRI of Spine – with new symptom noted with the hand, she wanted to look for changes in the spine.
* Clinical Trial – Interest in participating in current study their running? As you can imagine, lots of research and questions to be addressed before deciding. I’ll keep you posted regarding my findings and decision. I’ve attached their link from clinicaltrials.gov for your information. This study is funded by John Hopkins. If interested and you’re willing to travel to Baltimore, use the contact numbers listed to inquire about participation. If you have any questions, please ask and I’ll do my best to answer. Intrathecal (via spinal cord) Rituximab for SPMS and PPMS https://clinicaltrials.gov/ct2/show/NCT02253264term=rituximab&rank=199
Overall, this was a very productive appointment. I do believe my new neurologist is a good fit for me and the management of my MS. She was smart, caring and willing to listen and address my concerns. These characteristics are so important and valued by me. I remain thankful for the wonderful people who God has put in my life!
As we headed home, BFF and I reflected on the appointment, what was learned and the research to be done…not to mention our laughter along the way! I thank you, BFF, for your never-ending love and support! Let the journey continue!
“Count Your Blessings”