That Feeling When You Get Bad News About Your MRI
Disclaimer: I will be fine. I just need to be dramatic about it first.
That Feeling When You Get Bad News About Your MRI
This morning my neurologist called with the results of my recent MRI to drop this bombshell: “There is a large new intramedullary lesion within the left lateral medulla.”
Okay, fine. Nobody talks like that.
What she actually said was that I have a new lesion on the part of my brain that affects speech and swallowing. The quote above is from my MRI report. Add intramedullary to the list of words I wish I didn’t know. (I was not good at biology, obvi.)
Over the past few months I’ve had the alarming experience of losing my voice, struggling to speak, and occasionally gagging on water. I suspected this was MS, but for some reason (fucking brain damage or good old denial?), I didn’t actually realize I was having an attack. I’ve been in the MS game for 19 years now, but it’s been a minute since I’ve had a real relapse. My shiny new intramedullary lesion (am I saying that right?) was scientific confirmation that the beast is waking up, and the news landed like a gut-punch.
Instead of taking this in stride, I burst into tears, like a rookie. New lesions aren’t supposed to happen to me. I had Lemtrada! What gives? Am I letting the stress of Covid get to me? Am I eating too much Miss Vickies? Not getting enough sleep? Drinking too much? Hanging out with the wrong crowd? I swear to God I’m flossing. Wait. Is this because of all the swearing?
WHY WHY WHY
My tears this morning weren’t just tears of grief or frustration. My tears today were white hot tears of rage. In the years between my last Lemtrada infusion (2016) and now, I had been dismissed as having unmodifiable disease with no option for treatment despite worsening symptoms. Go home and hope for the best, but like, plan for the worst, cause this shit isn’t getting any better. I was effectively getting dumped by my doc.
Thank you, next.
I will not be Pete Davidsoned. And I will not throw my hands up in defeat. It was not easy or fast, but I finally found a new neuro who was not willing to give up on me and who believes Ocrevus is my best option. But months of insurance delays and Covid-caution postponed my access to treatment even longer. Knowing that if only I had been on this drug six months earlier I might have never needed to think about my medulla and how it might try to take my voice and choke me out is a frustration that is difficult to articulate. Like, I really need to speak to a manager. I demand a refund and a lifetime supply of whatever it is you sell, because:
THIS DIDN’T HAVE TO HAPPEN.
Work will begin with a speech pathologist to protect and rehabilitate my speaking voice. I will spend my precious energy learning things like safe swallowing techniques and I don’t even know what the fuck else. It’s hard to feel like you’re enriching your life when you have to spend so much of it just trying to catch up; chasing the simple abilities you once took for granted.
All this to say, be a squeaky wheel. MS is not like many other diseases that have obvious consensus-based treatment plans. No two cases are alike, and doctors have vastly different opinions on how to treat the disease, despite the fact that research tells us early and effective intervention is key. If only I’d had treatment x a little earlier is a heart-breaking path I’ve been on all too often. If you feel like your doctor is willing to gamble with your future, find a new doctor. It’s not good enough to react to MS. We must prevent attacks from happening at all.
End rant. Thanks for listening, Trippers.
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Damn girl, I’m so sorry but regardless Don’t Give Up!! We all need you ?
Seriously, why your voice? Of all things! You have a beautiful voice and I remember seeing a post a few years ago of you in a chorus group. WTH.
I got optic neuritis for my first symptom years ago, while working on my photography career.
I’m sorry this new lesion happened to you.
Keep moving forward, you can do this, you are strong and a huge inspiration to me and so many others ❤
Hugs to you Ardra…
This sucks! Not slurping ramen noodle sucks, but get all the shit out of your septic tank through a big tube suck! The game of “what if”, “why didn’t they”, or (the worst) “why didn’t I” is one I play in my head way too often. Vent, rant, cry, and then get back to doing everything you do! I appreciate your honesty, information, opinion, perspective, and humor!
Hugs! It’s a tough pill to swallow but you will make it through. Isn’t it crazy how symptoms appear and we don’t even think about them?
Keep breathing and keep smiling! You’ve got this.
Ardra – this disease we share is so evil! It hits below the belt and steals what is most precious to us. But we don’t give up! No matter how beaten down you feel, just don’t give up! Go to bed feeling like you’ve hit rock bottom, but get up in the morning and keep going. Love coming to you from northern BC
Sending love and strength and all the stuff. The swallowing is the scariest part for me. I will gladly pee myself, drop the dog’s full bowl of water, put jumpy legs to bed early and make everyone cluster patiently in the waiting room of the sentence I’m about to formulate in order to bury the swallowing issues for good.
Eyes welling up and the lump in my throat tells you that you are loved. And MS can take a flying leap. The constant questions of what should we have done differently is a ghost that haunts our days. Ghosts suck.
Tonight that song really touched my soul. I read your blogs and I am like “Damn, I feel just like that.” I’m really sorry to hear about your MRI. It sucks and this is hard. ?
Wow. Such a cruel disease. Your voice is angelic and prayers for you that it will return. Nothing like working hard for something you already had. Hugs.
https://youtu.be/uz7cU_gCTp4
You have us to amplify your voice. Use us as the human microphone.
Also, did your neurologist say anything about neuroplasticity?
As I sit here reading this with my son and husband around me…I cry. I thought I had a hard MS day… but realize we all have hard Ms days and then there is this. I cried as I read, I cried as I listened to that so appropriate and beautiful song I’ve never heard before. I still sit here and cry, wanting to have Some wine…oh wait you love champagne so let’s have that. I’m so sorry this had happened and that you should be on the Ocrevus. I hold your hand as you walk through this battle that you will win. I’m here to understand and lift you up. Fuck, I’m scared and sad…I cry because you are my friend! ❤️
Thanks Tina. It’s good to get it out. I’m feeling much more optimistic today, as I hope you are.
You have an exceptional command of language and while the beast may challenge your speaking ability, you can still express your thoughts through your posts and inspire others. Be strong!
Ardra damn I’m so sorry. But hard as it is got to keep fighting. Don’t let the damn disease win. Drink your self to sleep if that’s what it takes. But get up and go for a walk in nature with your new pup. I tend to ignore the crap that MS gives me as it’s my decision if I let it get to my soul. Naive maybe but I get up every day open my curtains feed my dog get out to my back deck even for one step out for a breath of fresh air. I’ve lowered my expectations but I’m content. Take care of you. Sending you hugs
I’m giving a HUGE middle finger to MS for you! That sucks and I’m sorry you have to go through this…cry all the tears you need!! Big Hugs
Ugh. I’m sorry. I’m really hoping it’ll “flare” but then settle down into a level of “annoying at times but not so bad.” I’m thinking good thoughts for you!
I’m sorry. You are a role model to many of us living with this shitty disease so it’s hard to read what you’re going through. I know all too well the, ‘if only I had treatment earlier…’ feeling. I empathize, but I’m also pissed. I’m pissed about the red tape and beurocracy, the insurance delays and the dismissive professionals. I’m pissed at the necessity to be a squeaky wheel. You (we) need so much more. Thank you for sharing your story!
MS does seem to know where to get us, you and your lovely—aaagghh!!!!! After a few more rants or many, might you compose??? I am glad you switched docs and found someone who will work with you and try different meds.
My MS bugaboo is walking and hiking, T 11 lesion got me early on, but MRI was only for head a cervical so I fought about leg issues and pain for a couple of years until I had a full spine image.
Having MS is a battle, being treated properly for MS is almost as large of a battle. I hope Ocrevus serves you well.
It took me years to get a spinal MRI as well. I think (I hope?) things are changing and monitoring is becoming more thorough and newer and more effective treatments emerge. Spinal lesions can do a lot of damage.
Tears in my eyes and aching heart for you. Fuck Ms for taking your beautiful voice! I hate the that it seems what is most precious to us. Need your eyes? Zap! Need your hands? Need your legs? Need your legs? ZAP! WTF? Hang on tight. We love you and demand the gods to give you a break. Thank you for being you.❤️
Dear Ardra, What a beautiful voice you have my heart aches for you I will keep you in my prayers every day praying that your voice will return. This is an evil beast that we all have living in us. Never knowing when it will attack. You are an inspiration to me. You have a voice of an Angel you will sing again! Much love to you?
I’m so sorry Ardra! Ms is such a dirty bastard. The lock down is such a bastard. The whole thing sucks so bad. Your singing is so beautiful! Hold your head up and keep going.
Love & prayers!☆
Big huge tears today as we read this, mixed with warm smiles and memories as we listen to your angelic voice. You’ve always been a force to be reckoned with, against this damn disease and every other obstacle in your life. This part seems the most unfair though. Stay strong, you have so much more dreaming to do! XO Lisa & Hugh
I wish you well with your treatment path from here. You have an exquisite voice, and there are more songs to be sung. Give those insurance people hell, and tell the universe that, while its latest little jest is a good one, you’ve got a better comeback! ?
Hang in there you make so many of us smile laugh and cry. I also ask my MRI to “not betray me,” it’s my mantra. We are with you, around you and behind you tripping away!
MS sucks in ways I know and have yet to discover. Always lurking. The way you put your words on paper (or internet) is the best. I love what you write. I’m rooting for you.??
“hard to feel like you are enriching your life ..” yeah, I was thinking that this morning as I try to maintain/regain some ankle mobility. The difference between us and ‘normal’ people is that all the crap we do to retain our abilities we do because we have to. The fear of losing what little you can still do is overwhelming. Lots of tears, I am with you on that. But we have to pull on our big girl panties and carry on. Rage on.
Your voice is beautiful. Thanks for sharing this loss with us (so eloquently!). I’m crying for you. You’ve encouraged me (a secondary prog MSer) to push to start Ocrevus even though I don’t have signs of active disease on my MRI.
I’m so sorry to hear this news. I will be sending healing thoughts your way. Thank you for always being so authentic with your feelings and struggles ❤️
Welp.
We see and hear your tears of rage. Hang in there!
“Hard to feel like you’re enriching your life when you have to spend so much of it just trying to catch up.”
I think this too. I also say, “I’m just trying to get to Square One.”
🙁
I got bad news on Tuesday. At least that specialist looked me in the eye, my neuro who must see lots of people with these diseases, could barely even look at me.
I’m so glad I found you.
W.
Sorry to hear you got some bad news of your own, Wendy. I think compassion fatigue is a real thing, unfortunately.
Your voice is absolutely beautiful Ardra. Thank you for sharing with us! Know that you are not alone in your suffering. We are in a club that none of us want to be a part of. Your honesty is helpful to us and I hope that our comments back to you are equally as comforting. ?
I floss too. But it doesn’t seem to help much.
I’m so sorry to hear about your new lesion! I’m about to switch from Ocrevus to Keysemta. Doc says it should work as well as the Ocrevus Without needing the steroids and the Benadryl. Something you might want to ask your Neuro about. Good luck,Step up a lip and all that good stuff.After ve nting I hope you feel more positive. Keep up the struggle?
Ardra
Firstly I’ve listened to this song 6X in a row…I’ve heard you sing before and was smitten with your voice.
You helped me conclude my wheelchair color 4 years ago. BTW went with black titanium vs a look at me color. Now 7X. There are so many deep thoughts we go through with this shitty disease but your levity to the gravity helps many of us. Please know you have a virtual audience bigger than you might know. Thankfully we have our keyboards to link us…
p.s. How can I down load your song to my playlist? Thank you.
Karen, thank you so much for your kind and thoughtful words.
I am not good at tech and don’t know how you can download this, but I will try to email it to you.
A.
The Ontario health care system is bullshit. Period. I feel for you. I’ve been waiting for an MRI for suspected MS for nearly 90 days. Ridiculous. What if, God-forbid, I actually don’t have MS but a tumor? Health care in Ontario needs to be renamed “Sick Care” because by the time you get any diagnosis you’re so far down the path you’ve lost sight of how you got here to begin with. Anyway, sorry to bitch about my own (comparatively meagre) problems on your blog. I’m sincerely sorry for what is happening to you. But thank you for making me smile while reading about your take on life with MS. Sarcasm helps lighten just about everything.
I’m so sorry to hear you’re in this completely unacceptable situation. Have you asked to be on a cancelation list? Or even referred to a different city, if you’re willing/able to travel? In the past I would have told you to cross the border and pay for one in the US, but that’s just not possible in Covid times. I would raise some hell about this and continue being a squeaky wheel. Fingers crossed you get some answers soon.
Thank you for your suggestions. Yes, I had tried them all. However, the Universe must have heard me vent on your blog as I JUST got an email confirming my MRI date for October 18th. I hadn’t realized how hard I had been holding it all in until I saw that email. I am tearing up just knowing I have a date for answers. Again, thank you!
“If only I’d had treatment x a little earlier.” That thought will haunt me forever since years ago, when I was still walking, my visionary doc (your shiny American doc, coincidentally) tried and tried and tried again to get my insurance company to approve a drug already on the market and very similar to Ocrevus. He believed it may help my MS from progressing.
But, No. No. No. How come no? Because that pre-Ocrevus drug wasn’t OFFICIALLY APPROVED for progressive MS. In other words, because my insurance didn’t legally HAVE to pay, they wouldn’t. They thought, Yay! Loophole!
Cut to 8 years later, and I’m not walking anymore because my progressive MS has predictably progressed. But now there’s Ocrevus, the older drug’s sibling, and it IS officially approved for progressive MS! My doc immediately put me on it, and guess what, nearly no progression since.
Wait, you mean maybe I’d STILL BE WALKING if my insurance had not overridden my doc and wormed out of paying 8 years ago? (Yes, everyone’s MS is different and I’m not saying Ocrevus is right for everyone)
So yeah, white-hot rage. But I am trying to cool it and move on. Live for today and all that and thanks for giving me all this space to vent. Best of luck to you, and thanks for your great blog.
Heartbreaking. There are so many problems with the system. The insurance process for sure, but also the insane cost of these meds.
I am happy you’re being well looked-after by dr Williams. There are some excellent docs out there who will go the distance for us. We all need people like that on our team.
I just listened to your song. How beautiful.
So beautifully sang, such distressing news, but I know you’ll fight to make the most of the situation! Good luck
I feel you. Mediocrity is completely unacceptable when we’re already up against a disease that has nowhere to go but down. I feel grateful that even though I’m just starting this journey, I have resources like your blog to validate me and a young neurologist who’s willing to not cut corners. We are the only experts when it comes to what’s normal and not, and we deserve to be heard. Keep fighting the good fight and thank you for your efforts. Sending good thoughts your way.
I think part of the problem is that we don’t have enough neurologists to go around. My clinic has 7000 patients. We need more resources or some of us are going to slip through the cracks.
Thanks so much for following and for commenting. Glad to hear you’ve got a good doc!
This cruel disease robs us of the things that make us who we are! your voice is amazing, and I am sorry you are going through this! your writing shows that you are a fighter–which can be exhausting, however, the alternate of fighting is a very dark place—go there and “visit”, then keep rolling that boulder up the hill. your are in my prayers!
IDK what to post. You are so young, hot, smart, attractive, talented, etc to go through this? Your swallowing and voice could improve like Selma B (likely not from HSCT) or it may not. Stress anxiety jackpot. Oddly I’m going full-on wheelchair, broke hip, pandemic, heroin and mental roommates and my great sadness/grief is from losing my cat to cancer?
Damn… sorry to hear this shitty news love. My hands/wrists are starting to weaken now ??♀️ Well we may not be able to function normally but you can still have Miss Vickies and I can watch my daily soap opera in peace. Thinking of you always. ❤️❤️❤️
I read this and reread it out loud to my husband. I had a similar experience between copaxone, then generic copaxone. Good news is that at after getting approved and 2nd Ocrevus infusion, my MRI no longer had new lesions. I hope you have similar results. And everything that has been affected is returned. Enjoy your posts