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!

ms.uk.org

ms.uk.org

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”

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27 Comments

  1. So glad you’re happy with the new neurologist. A good rapport with a doctor is half the battle…. I am sorry that the M.S. is in a progressive state though… Hope the new trial if you decide on taking it, is good for you… Diane

    • Thank you for your kind words Diane. I complete agree with a good rapport. I was so relieved! We are reviewing (and researching) the informed consent information they provided, all 14 pages. In the meantime, working hard at the recommendations. Hope you’re doing well! I like your smile in your picture! 🙂

  2. Glad you had a good visit!

  3. Finding the ‘right’ doctor can certainly make a huge difference. 🙂

    • You’re so right Judy! Thank you for your post and support! Let the snow continue to melt and your garden begins to appear! 🙂

  4. Thank you Catherine, for sharing, it’s good when we have a new Doctor we can Trust it’s half the battle the rest is up to God who uses many tools to heal. Something that was passed onto me, was that Broccoli helps the Nervous System, it even looks like a stem of the nervous system, it seems God is letting us know the benefits they have like with other foods.

    I created a Power point which I may Post again ( see link below) called “God’s Amazing Food Creation” it has more detail than the one I received a few years earlier which was also about the benefits of certain foods which was amazing.

    “God’s Amazing Food Creation”- https://freedomborn.wordpress.com/2013/10/06/what-are-we-eating/

    The benefits in the foods listed have been researched by Professionals too and it has blessed me in realizing how awesome is God’s creation of food in helping with health concerns. If you do check it out Catherine, please let me know what your thoughts are in regards to what they and I have shared.

    Christian Love in Christ Jesus -Anne.

  5. You have a great attitude, Catherine!

    • Thank you for you kind post Bill! We both value the benefits of a great attitude as we place our trust in Him. Glad you’re feeling better! 🙂

  6. Jill

    Oh my dear, dear friend it was my pleasure to accompany you & I’m here whenever you need me! I must admit we are both in the same boat with being late which I think we handled rather well since anxiety was at a all time high. We both hid it all so well 😳 next time we will allot much more time & try to plot a better route & better place to eat 😜 lol! I think both of us were running on empty! No lie! Thank the Lord for your beautiful spirit & precious heart my friend. You are one of the Lords blessings to me. Let’s do it again! Love ya girl! 😘

    • You are the best GF! I sincerely thank you for your never-ending support and love, my priceless gift from Him! Can’t wait for another venture! Love ya!

  7. So happy for you that you like the doctor! Is MS like MCS in that sometimes, stage 2 can be pushed back to stage 1? That’s the constant battle I wage–straddling that line and trying to push back…

    • So important to like you doctor, isn’t it!?! I will research MCS a bit. With MS you start at stage 1 (RRMS) and may or may not move onto stage 2 (SPMS) with no push back…right now. The hope is a treatment be found to repair damaged nerves. Then your push back battle would be in sight! Do you know what triggers you MCS?

      • All chemical smells–mostly perfumes. I’m also allergic to formaldehyde, so I get a nice double reaction. If I stay home and can avoid perfumes, I balance out a bit….but it is difficult. It will never be cured, but I don’t want to progress…and stage 1 is of course a bit more livable than stage 2. 🙂

      • Thank you for sharing and providing education for me. You can read all about the disease but nothing beats speaking with those who walk the walk every day. I clearly hear your battle with chemical smells and formaldehyde – their everywhere, in every product it seems. So proud of you for being your own advocate! Never saying never while striving to be the very best you can be! I’ve added you to my prayer list! Keep up the great work friend!

  8. Hi Cath, I’m so happy your visit went well & you loved your new Dr-that makes such a difference. Keep up all your hard work😘

    • Thank you Chris! We know how important a good Medical Team is for us! Enjoy your day! 🙂

  9. I’m so glad your visit went well! It looks like your steps were ordered all along and you have a “good fit” with your physician. As you said earlier “Praise the Lord!” 🙂

    • Indeed Lilka! Thank you for your beautiful comment! 🙂 Blessings to you!

  10. it’s good when we have a new Doctor we can Trust Catherine, it’s half the battle the rest is up to God who uses many tools to heal. Something that was passed onto me, was that Broccoli helps the Nervous System, it even looks like a stem of the nervous system, it seems God is letting us know the benefits they have like with other foods.

    I created a Power point which I may Post again ( see link below) called “God’s Amazing Food Creation” it has more detail than the one I received a few years earlier which was also about the benefits of certain foods which was amazing.

    “God’s Amazing Food Creation”- https://freedomborn.wordpress.com/2013/10/06/what-are-we-eating/

    The benefits in the foods listed have been researched by Professionals too and it has blessed me in realizing how awesome is God’s creation of food in helping with health concerns. If you do check it out Catherine, please let me know what your thoughts are in regards to what they and I have shared.

    Christian Love in Christ Jesus -Anne.

    • Good Morning Anne. Thank you for your wonderful and encouraging post! I can’t wait to check out your God’s Amazing Food Creation power point! You can rest assured I will have my pen and pad ready to go! 🙂 I’ll keep you posted! Love your reference of the central nervous system and the broccoli stem! He’s always hard at work even when I don’t realize! Hope all is well in your neck of the woods and that you and hubby are feeling comfortable each and every day! Blessings, Catherine

  11. Susan Clark Denny

    I’m so glad your new doc is so interested in getting in tune with you! And taking a tape recorder was a great idea! Thanks for sharing this journey with us.

    • We both know and value the importance of our doctors! Somebody getting ready to rock at “Laugh Fest” this weekend! Wish we were there! 🙂 Go get’m GF! Very proud of you!

  12. I’ve been so grateful that my husband’s work is flexible and understanding enough to let him come to my appointments with me. I’m especially grateful that he’s willing to! The second set of eyes and ears has been priceless; he’s caught so much that I miss because my mind is trying to wrap around so many things, remember symptoms I’ve been having, etc.
    As I think you know, I was just recently diagnosed in December. Since then, I did have a spasticity issue where I woke up in the middle of the night and found my foot twitching uncontrollably. Took me 3 hours to fall back asleep. I wondered if I should wake my husband, but what could he do? I decided not to. Foot continued to twitch next day, and then it turned into a whole leg twitch/kick, like I was continuously getting tapped on my knee to test my reflexes. It wasn’t until the second day that I found the bottom of my foot was cramping and my big toe was cramping and I was in pain! Then it went away about the 3rd day. So of course, I’d gotten on line and read all over the place that it’s a common symptom with MS
    Well just yesterday, I was talking to my husband’s cousin, who was diagnosed with MS almost 2 years ago. Spasms and twitches are the only complication he’s currently having, and when it started causing him pain too, from muscle over-use and cramping, he went to his neurologist. Apparently his neurologist believes that MS does NOT cause these symptoms, and he’s certain it’s just a deficiency of magnesium or potassium or something. The cousin is frustrated with that approach and is like, “When is he just going to give up and accept that it’s a side affect of MS?” Sheesh!
    Very glad to hear your appointment went well and your new doctor seems like a good fit! 🙂

    • Thank you for your post! So sorry to hear about your twitching, cramping and pain. Perhaps your neurologist could order PT for evaluation and exercises to relieve all your symptoms. I stretch three times a day to lessen these symptoms. They have helped and you are correct, both you and your cousins symptoms are MS related. Is neuro MS Specializing or General? Interesting about the magnesium (not familiar with the potassium relationship) deficiency. I do take magnesium and it does settle the physical symptoms (twitching, etc.) down. However, it won’t touch spasms. Worth a try to see if it will help. Before I started taking magnesium, neuro ordered a blood test for baseline. A tad low but within normal range now. Twitching is gone. We can appreciate a good doctor for sure! Keep up the great work and feel free to ask any questions. We’re all in this together! 🙂 Blessings to you and yours!

      • Awesome that you have the love and support of your husband! 🙂

  13. Hello again Cath. It seems God was looking out for you on this day! 🙂 There was a reason you were late (as there is always a reason for everything) and to find a Doctor who is caring and willing to listen is a fabulous boost! Your GF sounds great too… its fantastic you have such wonderful support 🙂 Keep strong and looking forward to hearing more from you. Hugs. x

    • Couldn’t agree with you more! Road trips with GF are awesome! I know God and loved ones make it so much easier to manage each day. You too? Enjoy your weekend! Hugs right back at ya!

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