The lesion on your spine is no longer visible on the MRI. However, you have 2 new lesions on your brain.
I was filled with excitement and disappointment all within 30 seconds of hearing my family doctor’s voice over the phone.
Since my diagnosis with Multiple Sclerosis in 2014 what’s been amazing is that when my MRI results come in, a copy of the report gets sent to my family doctor and she would call me right away to give me the news. I heard from her first in July 2015 and at the end of March 2016. So why am I only blogging about the March results now? Because I wanted to speak with a neurologist to properly process the results.
Ok so back to the story…
“Wait? What did you say? [pause for effect]
The lesion on my spine is gone? [more pausing]
What does that mean? Gone? Like no inflammation gone, or I’ve re-myelinated gone? [more pausing]
I had my “annual” spine & brain MRI the last week of March. The last MRI to monitor the potential progression of my Multiple Sclerosis was in July 2015. At that time last year, I had amazing news. I had no new lesions and many looked diminished in size. This time around, the report wasn’t as rosy. My family doctor called me the first week of April with the news. She said that she believes the spine news is a positive one but to confirm with my neurologist. I had to cancel my appointment with Dr. Baskind which was scheduled for mid-May as I had moved to Ottawa suddenly. So I had to wait patiently for a referral to the MS Clinic at the Ottawa Hospital, to meet a new neurologist.
As I said goodbye to my family doctor, she paused and said “I just wanted to let you know it’s been amazing to see how you’re taking care of yourself, it’s truly an inspiration.” It was so amazing to hear that from one of my health care team members and really lit my heart up.
It was taking forever to get an appointment. Luckily (or unluckily) my father had an appointment with his neurologist in June and let them know I was waiting for an appointment. We discovered that my records from North York Hospital hadn’t been sent over yet so a quick phone call to the records department and they were on their way.
I was seen on June 20th by a resident who put me through the interview portion of the appointment and all the neurology tests. I was finally able to ask her some questions including why did she have an interest in neurology and also requested to see the attending physician Dr. MacLean. She seemed in a rush when I saw her and I didn’t feel like she had the best bedside manners but she took the time to answer the questions I had prepared in advance and written down just in case.
I asked what the spine MRI meant. It was explained to me that I was correct in believing the inflammation is gone. The MRI technology is not sophisticated enough to actually see the myelin sheath so we can’t actually tell how much re-myelination has occurred in the area. It would only be visible if a cross-section were to be taken and for that to happen I’d have to be dead. So with that, I’m ok with no lesion showing up on the scan. I have to believe that what I’m doing to decrease inflammation is working.
I asked if I needed to worry about the 2 new lesions on my brain and while my new neurologist was honest that I should continue to think about Disease Modifying Drugs (DMDs) she fully supports and appreciates that I’m treating myself holistically. She said she would’ve been more worried if there were more than 2 new lesions so I can continue taking care of myself as I have been. I feel confident in staying with my current regime and ensuring I’m 100% compliant with the holistic, healthy habits that decrease inflammation and stress on my body.
I could’ve been really upset with the brain news but I chose to separate the two. I chose to celebrate the spine news and understand that the brain news is just a gut check to take better care of myself. Since my July MRIs, several things have happened. I spent months in a relationship questioning if it was right. Not wanting to hurt another individual and eventually completing that relationship at the end of 2015. This, needless to say, wasn’t exactly without stress. The week of the MRIs I left my full-time job at Kobo and was deciding to move across the province to Ottawa to be with a man I met 6 months ago. Amazing news but nevertheless, stress-inducing. I tried my hardest to not let it affect me but I can only handle so much. I wasn’t sleeping properly all the time. I can’t say that my supplement compliance has been 100%. So with those confessions I know I can take note of where I’ve been lacking and take these results as simply a reminder that I can always take better care of myself. This is simply a mark on the disease continuum to go back to everything I was doing when I was newly diagnosed. I’ve been a bit lazy and that’s ok. I can’t always be perfect. But I can continue to strive for better.
While I was at the MS Clinic I was also able to ask about the latest research published in many major news outlets.
1. How many of the patients are eating a healthy diet with no inflammatory foods in addition to the chemo & stem cell treatment?
Unfortunately, this was not a focus of the study and therefore there is no answer.
2. Is sleep & decreasing stress ever factored into this study?
Unfortunately, this was not a focus of the study and therefore there is no answer.
3. Does this research study have any impact on regenerating the myelin sheath or simply halting the progression of the disease?
Simply halting progression or reversing symptoms in the body. They are not able to study if there is the possibility of re-myelination.
3. Will this treatment be covered by our Health Care system or will patients have to pay out of pocket?
Too early to tell.
I also asked if these patients are being treated with their own stem cells and if MS is partially genetic what’s to say those cells won’t get confused in the future and start attacking the body again. I was informed that this is indeed a possibility but the hope is that these new cells won’t be exposed to toxins or environmental or lifestyle elements that contributed to this disease developing in patients in the first place so it hopefully won’t develop in the future. I completely see the benefits in this trial but I believe it is still too early to tell and the way the information was presented was very misleading to the general public who have been messaging me left right and centre that they’ve found a cure! I’m not being a negative nancy about it but if anything I’ve learned how to be realistic with this sidekick and I’m careful with the way all information is presented.
So on that note, I’m off to relax, destress for the evening, play with the puppies, take an Epsom salt bath and attempt 8 hours of sleep with one pee break in the middle of the night for Rogue.