Last Monday and Tuesday I went in for my spinal and brain MRIs with and without contrast to check and see if there has been any progression of my MS since my last scan.
Before I tell you what this report said, I want to tell you about what my first neurologist told me the day he diagnosed me with Relapsing Remitting Multiple Sclerosis in September 2015. My very first brain MRI that I had showed “too many to count” active lesions, meaning there were so many areas of my brain actively demyelinating that the radiologist who read it gave up and couldn’t count all of the damage I had. My neurologist (one of the “best” MS specialists in my state) told me that while it is impossible to say for certain since every case of MS is different and completely unpredictable, he would bet that without going on a Disease Modifying Drug (DMD) right away, my disease course would progress very rapidly.
That consultation with him has been on my mind a lot these past few months once I realized it had been well over a year since I stopped taking the FDA approved drugs. I couldn’t help but panic a bit thinking about what if I’ve wasted all of this time (and money) not following the specialist’s wisdom.
Well after a few failed attempts at getting my results from the hospital and my current (amazing) neurologist, I sent a message to my primary care doctor (who has honestly been a godsend to me through all of this) and asked if there was any way she could get me the results. She got back with me a few hours later with the results from my MRI.
Drum roll please….
No new changes.
What!!!! I was SO nervous that my brain would be lit up like a Christmas tree again with disease activity but instead it showed nothing new!! There is still a lot of old damage that can be seen on my scans but there was nothing new and no active demyelination! And I’m not on any drugs or doing any special “ms diet” to keep this monster at bay.
I’m stable. What a relief!!
If you or someone you know has MS or one the many other autoimmune diseases that HSCT can STOP, please look into this treatment. Does it work for everyone? No. Is it easy? No. Are there side effects? Yes. But there isn’t a single DMD that works for everyone, or one that doesn’t have some really scary side effects. A disease modifying drug can (maybe) slow down the disease. The chemotherapy in HSCT can STOP disease activity.
Don’t wait! It’s been proven over and over that the earlier you get this treatment done, the greater your success rates are for halting your disease. Don’t wait until you get worse.
So do the results from this MRI mean that the treatment worked and my disease is gone? Not necessarily. For now, it is stopped and I am stable. The goal is to make it to 5 years post transplant without any disease progression or any new or worsening symptoms. My old MS symptoms are for the most part gone or much less burdensome. That’s a win. I had my first MRI since my diagnosis that didn’t have any changes (and I’m not on DMDs!). That’s a HUGE win in my book!!
Thanksgiving is upon us here in the States and I have a lot to be thankful for. And if you’re reading this, I’m thankful for you.
Thank you for walking this journey with me thus far. We’ve got a long way to go, but so far, so good!! I’ll be back with more updates and anything new as time goes on.
Much love.
¡Adios!
Adios, MS! 
Love this news and so happy for my warrior friend! Congrats and Happy Thanksgiving to you and your beautiful family!!
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