Tomorrow I am going in for my seventh infusion in the clinical trial of the remyelination drug elezanumab. For the first three infusions after I came home I was really wiped out. I rested in bed for two days as much as possible despite having two very active small children. I was exhausted.
Infusion number four presented a different feeling. I was no longer wiped out; I felt semi normal, for me. I started noticing some small changes.
- I feel like my cog fog is much less than it was. My thinking seems a bit clearer, less foggy. It’s not perfect, but it feels like there has been a change.
- I can do the tandem walk- the heel to toe walk is one of the tests given during the clinical trial. In fifteen years I have been unable to do this walk. It felt like the hip flexor muslce just wasn’t there. I watched a video by Dr. Aaron Boster’s video on decoding the balance exam in which he explains what the neurologist is evaluating when giving tests like the tandem walk. He notes that the tandem walk evaluates balance, which is controlled by the cerebellum. I discussed this with my physical therapist at my appointment yesterday. I asked her opinion. She said whether there was remyelnation happening in the cerebellum or not, she couldn’t speak to. However her and I have been working on strengthening the hip flexor muscle and strengthening the muscles can lead to better balance. This is the idea of neuroplasticity: If you are strengthening the pathways to the muscles you can relearn how to balance using them.
- My walking ability seems to have improved somewhat. I have been able to take more breaks from my cane. Having said this, there are still a lot of ups and downs.
One of the downs being, a episode of increased heart rate while cooking lunch. When I started monitoring my heartbeat with my watch while trying to cook two things at once my heart rate had jumped to 118. I sat down and my heart rate continued to climb up to 140 beats per minute. I sat down for a few minutes but my preschooler needed me and when I got up to help him in the shower my legs went out from under me and I fell back. I caught myself with my arms, trying to prop myself up; I just got so tired. I called for my husband from the bathroom floor and he told me he loved me, and that I’m surrounded by people who love me. Later he told me I was going in and out of consciousness. I felt like I was being pulled into that cave inside myself I have encountered before. He got me resting in bed, feet propped up, lemon water. Then he gave me something to eat and I recovered.
I emailed my neurologist’s assistant as we continued to the beach as planned. You can’t promise your kids the beach and back out last minute. While looking at the waves I was thankful I was at the beach and not the emergency room. We had been questioning if we should go there instead. I don’t know whether this was wise, but I was lucky. I have had heart flutters and palpitations for ten years. It’s a strange phenomena in my body that had been looked into and excused. Now it’s back.
On Friday I went to my PCP. He is a DO who specializes in treating patients with chronic conditions. I detailed the experience for him. He gave me an ekg, and tested my blood pressure and heart rate while sitting, standing, and laying down. He ordered a heart rate monitor that I will be wearing for a month and I also need to get an ultrasound done of my heart.
Is it just me or does it feel like we should get a hall pass from all other chronic conditions if we are already dealing with MS? Unfortunately our bodies don’t work like that. I have low grade asthma, and I only need my inhaler when I am having MS Hug. I have Hashimoto’s thyroid disease. Now its time to play the guessing game of what is going on with my heart. I’m tired of this Guess that Chronic Disease Game Show. Can I pull out as a contestant? Or better yet can we just cancel this show all together? The prizes suck!
There are good things to look forward too. While at the doctor I finished my submission for the Novartis Innovation Prize for Assistive Tech for Multiple Sclerosis. I will go into this in the next blog. So I was focused on my heart, and this project. Hint- it’s an idea for a better and more portable cane. Then after I pressed submit I found they extended the deadline until Jan 17th. However, the good news is if you have an Idea you can still submit. Novartis Innovation Prize for Assistive Tech for Multiple Sclerosis.
Tomorrow I’ll be seeing the neurologist conducting the evaluations for the clinical trial. He’s nice and I have a list of questions for him.
- Question One: How are you measuring remyelination?
- Question Two: Can our MRIs show remyelination taking place or are they a precaution to make sure there is no new disease activity?
- Question Three: What is my EDSS score and what was it when I started the trial?
- Can I take a peak at that tablet and see my scores for all the tests? 😂
So I’ll keep you updated and let you know what I find out tomorrow. I also have promised you another blog telling you what my submission is for the Novartis Innovation Prize.
Links you may want to check out:
ms GUIDED Bits 