MRI Baseline For Ocrevus...

 Written 7/15/2022



The words that come to mind while living with a chronic disease are unpredictable, discomfort, mentally exhausting, aggravating and nerve-wracking. Since my last blog there has been quite a bit of things that have happened in my world. 

The beginning of June our household was flipped upside down as COVID made its appearance for the first time since the start of the pandemic. It started off with my husband and son which thankfully I was healthy and strong enough to help get them back on their feet before it decided to challenge my immune system.  Both of the boys healed quickly but I on the other hand took longer because I don't have an immune system to combat the virus. After I tested positive my MS doctor recommended that I get the monoclonal antibody infusion to help boost the immune system. I spoke with an urgent care doctor about my concern while they did a quick check up to ensure that my lungs and breathing were okay. I was quickly referred to the hospital infusion room and within the following day I was in to get the treatment. It didn't solve the symptoms right away but within a week I was feeling more like myself. It definitely sped up the healing process. If I didn't get it, I am sure that I would still be struggling to get better.  Funny thing is that my MS symptoms were not seen during the couple weeks of not feeling well due to the virus. 

Don't worry... My MS symptoms made their appearance as soon as I was feeling close to 100% and done quarantine myself. Of course, it happened to be the entire leg spasm/spasticity (blog post I saw the sign...I ignored it) episode which prevented me from walking and made my entire body fold. That made it episode #2 since June. During this entire event I had to reschedule my June MRI for July 14 due to being exposed to COVID. For the safety of the healthcare and doctors' office I let them know. We are all doing 100% better now and enjoying the summertime the best that we can with the heat wave that has finally come our way. 

On Thursday July 14th we loaded up and made our way to Bend, OR to get my MRI completed and receive results. My last MRI was March 2021, so it's been a year. This MRI was set to be a baseline for Ocrevus my current and new medication. It took over 1.5 hours to complete because they did a scan of the brain and spine with and without contrast. The contrast is used to see if there are any active lesions. I was impressed with the tech this last time. Even though this isn't my first rodeo with MRI's this tech offered music and a mirror so I could see them while in the machine. Lying on my back and staying still is a tough task to ask especially with Latin music blasting in my ears but overall, I did good. I was more worried about my newest spasm/spasticity episode happening which would prevent me from being still. Thankfully that didn't happen. Having the opportunity to listen to music during the scan made the time go faster but the last 15 minutes are always the toughest and takes a lot of discipline to ensure that I remain still. I also don't have to wear the fancy hospital gowns as long as none of my clothing doesn't contain any mental. It is nice to be comfortable for long scans. 

By the time I finished my scans I had 5 minutes until my follow up appointment to get my results. That is one thing that I like about the office I go to. I can request an appointment after to get results instantly. The news that we heard was not what we like to hear but it was a relief to know that the newest symptoms have a cause. We are not completely in the unknown.

RESULTS: 2 NEW LESIONS (1 Frontal Lobe Brain, 1 T2 spine) but NO ACTIVE LESIONS. 

Thoracic Spinal Cord Injury: Functions Affected & Recovery (flintrehab.com)
Brain Map Frontal Lobes | Queensland Health

My doctor said that the spot on the frontal lobe would more than likely not cause any symptoms because of its location. The spot-on spine T2 is probably the reason for my new symptoms (full leg spasm/spasticity). The question that always stumps us is trying to figure out the timeline as to when those two spots could have presented themselves and were active. After walking through the past year and the changes to the new medication I think we decided that it could have been between the month and half of trying to introduce Ocrevus to the body. It was such a rough transition that it made me vulnerable to new lesions. It takes a while before Ocrevus kicks in and starts to be effective and my body is still adjusting. It can take up to 3+ infusions before you really see any results. My doctor did express some concern about the pain levels I get with my new symptoms and suggested that I maintain a low impact workout routine to avoid aggravating the newest spine lesion. Giving my body the opportunity to heal is for the best. My next MRI will be a year to see how Ocrevus is doing . 

I am still trying to navigate through my newest MS symptoms and try to understand what may trigger a flare. This alone has been exhausting and frustrating. Pain levels are even more when in a huge flare up. I have a high tolerance for pain and this leg spasms/spasticity make me feel like I ran a marathon. It takes a few days to recover. 

Going in for any tests and coming out with results that show that there is a change that has occurred is daunting and not always what I want to hear. I honestly have lost count of how many lesions I have since I was diagnosed in 2017. I know that there is NO cure and that disease modifying treatment can help slow the progression. Accepting this is the toughest. I don’t want to think of where I would be if I wasn’t on a DMT. I haven't quite grieved the recent results or created a plan of attack like I usually do after tests. Within a time period I will take a moment to myself and adjust accordingly. 

My next adventure is scheduled for September 29th at 8:30am with an Ocrevus full dose infusion. That is right! It has almost been 6 months. We head back to Bend, OR to join my nurse from round one. Our goal is to get the full 600ml at a faster speed then round one. If things don't work out, we will go for 2 half doses. I hope and pray that we can accomplish everything in one shot and that there are minimal side effects after. 


Every day is a BLESSING!
I chose to NOT GIVE UP!
I AM ME!
I will continue to GROW!
I am STRONG!
I can LIVE my DREAMS!
#RENITASTRONG
I am the INEVITABLE MS DEFYER

WATCH ME!!!










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