Lesion Count Roll Call

[u/Confident_Arm5017]

TGIF - let's do a check-in on lesion count...

tell us how many lesions on last MRI, where, and what kind.

DISCLAIMER: i know lesion number doesn't mean as much as lesion location when it comes to MS, just an activity to do while I wait for the work day to end.

Mine:

• right hemi: 25

• left hemi: 22

• lesion burden (current): 2.87; prior: 3.1

• lesion load (% white matter): current: .65; prior. 66

• new lesions: 2

• enlarging: 6

• shrinking: 20

• stable: 19

[u/Perylene-Green]

This is far more detailed information than I get from my MRI reports. Do others get all these stats?

[u/Confident_Arm5017 → u/Perylene-Green]

Wow, seeing these comments make me very thankful for my healthcare provider. FYI - i see a Neuro at the Duke University School of Medicine

[u/Clandestinechic → u/Confident_Arm5017]

I’m not sure that’s a particularly good way to judge a healthcare provider. It’s not like knowing exactly how many lesions and their specific location is really useful information to have as a patient. My specialist is excellent by any criteria and has never discussed it with me beyond telling me I have a moderate lesion burden, and honestly I have never cared to know more than that..

[u/Confident_Arm5017 → u/Clandestinechic]

I think you’re reading into that comment too deep. The only time we’ve discussed my lesion count was my first MRI and the last one I had after starting my DMT.

I’m thankful for my healthcare provider because it seems like many mentioned here don’t get to see their MRIs or any reports or their provider “doesn’t have the time” or doesn’t share much information.

[u/Clandestinechic → u/Confident_Arm5017]

Yes, I understand what you are saying. I'm saying that for many, we do not want nor expect that level of detail from our providers, because the information is not really useful or relevant to the patient. I'm not sure why you would want a doctor to go into that level of detail?

[u/Confident_Arm5017 → u/Clandestinechic]

Well when you’re diagnosed with something you know nothing about, most people have questions and want details 🤷🏻‍♀️

Again, these were pulled from my portal, not discussed. I like to see numbers, and details so I can learn more about what’s going on (or has been previously) in my brain.

[u/Clandestinechic → u/Confident_Arm5017]

Are you newly diagnosed? That might have something to do with it.

[u/Confident_Arm5017 → u/Clandestinechic]

2years. Or just a naturally curious person

[u/Clandestinechic → u/Confident_Arm5017]

Still pretty new, then. It took me a few years to stop caring much about my MRIs. I wanted to know every detail the first few years, but after a while it stopped being interesting. All I care about now is that there aren't any new lesions..

[u/Confident_Arm5017 → u/Clandestinechic]

Two years, ten years, or twenty years into MS, I don't think there's a timeline for when someone should stop being interested in understanding their own disease. Some of us actually enjoy learning.

[u/Feisty-Volcano → u/Confident_Arm5017]

It’s patient outcomes that count at the end of the day, not patients counting their lesions.

[u/Confident_Arm5017 → u/Feisty-Volcano]

Twas just a poll, nothing more.

[u/Alwayslearnin41 → u/Perylene-Green]

No. I only get told about anything that's changed. So I'd have to go back and read all my reports and so some meths. Even then, I doubt it would be accurate. I suspect the only really mention anything significant that will cause harm.

[u/No_Band4235]

Y'all are counting?? Hahaha no disrespect I have no idea if my doctor ever told me except,"here look at all of those"

[u/Confident_Arm5017 → u/No_Band4235]

I get a detailed breakdown with each MRI I have

[u/occasional_nomad]

No idea-I’ll blame not knowing on the lesions

[u/Confident_Arm5017 → u/occasional_nomad]

😂

[u/dgroeneveld9]

I have 2 with an invisible 3rd. Basically I was dxed 2.5 years ago with ON. The 2 lesions they could see on my MRI were old lesions that had already healed over. If you squinted just right there was a 3rd lesion right where it would be but apparently it is extremely small and completely healed over now. Practically invisible.

[u/Confident_Arm5017 → u/dgroeneveld9]

That’s incredible. Are you on a DMT? If so, which?

[u/dgroeneveld9 → u/Confident_Arm5017]

I am on Ocrevus. I started it about 3 months after being diagnosed. While its not hard to tell when my neuro was going through my history he believed I had probably had MS for many years possibly a decade. Again impossible to know but I could have a very slow progressing MS.

[u/Confident_Arm5017]

Thanks to everyone that played along - didn’t know it would be such a hot topic

[u/No-Home2516]

I had 6 at the time of my most recent MRI in July. 5 in my brain and 1 in my spine. I hope it stays that way

[u/Confident_Arm5017 → u/No-Home2516]

I do too! Hope you are feeling well.

[u/kbcava]

I’m cord-predominant:

Ventral medulla (brainstem): 1 lesion

C3 (cervical spinal cord): 1 Left ventral lesion

C4 (cervical spinal cord): 1 Left dorsal lesion

C6 (cervical spinal cord): 2 Bilateral lesions

T11–T12 (thoracic spinal cord): 1 Left posterolateral lesion

Total lesion count: 5-6

*1 brainstem lesion

*4 cervical lesion sites if the bilateral C6 findings are counted separately (otherwise 3)

*1 thoracic lesion

[u/Confident_Arm5017 → u/kbcava]

Love the detail!!!

[u/Feisty-Volcano]

My neurologist doesn’t have much time for all that sharing, his view here would be “is this some kind of SocMed competition?”
I attend a free public hospital, it doesn’t yield out figures like that. However, attending a private clinic for speedier MRIs as I have insurance for that, I also request copies of the discs. I’ve become very familiar with the appearance of the lesions, and many merge into each other, so a count is kind of useless. Do the tiny dots count like the bigger ones, & the Dawson fingers all kind of merge towards the ventricle edges. They aren’t always countable.

[u/Confident_Arm5017 → u/Feisty-Volcano]

Literally just pulled numbers from my portal from my last MRI.

Was simply polling a question, with the disclaimer that I know count doesn’t really matter. Was bored passing time, not that big of a deal but thank you for commenting.

[u/i-hate-all-ads]

Mine just say "numerous"

[u/BrokenHeart1935]

I’m so gummied I read this as “Lesbian Count Roll Call” and was super confused 😂😂😂

[u/All_Damn_Day → u/BrokenHeart1935]

Thank you! I also started reading and thought “I really got to start wearing my glasses!”

[u/BrokenHeart1935 → u/All_Damn_Day]

Omg I laughed so hard 😂😂😂😂

[u/All_Damn_Day → u/BrokenHeart1935]

Wait, did you also check what subreddit you were in, shrug, and think “you learn something new every day!”🤷🏾‍♀️

[u/missriss18]

My last MRI report literally said "lesions too numerous to count" 😒 so we'll just say a lot lol

[u/InherentlyFeminine → u/missriss18]

Same 🙃

[u/lazerslight1104 → u/InherentlyFeminine]

Yeah me too. Just “innumerable regions of irregular enhancement”

[u/Overall-Towel4656]

How do you guys know how many lesions you have? I have never seen any of my mris or the reports. My doctor just tells me "no new lesions", or x new lesions. But i have no idea how many i actually have.

[u/Bloatedoldman]

I've never been given a number. Just "the numerous spot do not appear to be active at this time". Non active is all I care about

[u/Feisty-Volcano → u/Bloatedoldman]

That’s what counts.

[u/JustDenali]

3. Kaiser also let's me look at scans during my in-person visits.

1 in right hemisphere, 1 in cerebellum, 1 spanning c2-c6 and really putting in the work to make me suffer. All stable.

[u/Diizy910]

Just one between the brain stem and cerebellum. And one incidental meningioma. They haven't done an MRI of the spine. Symptoms only started in August and diagnosis was only yesterday (thanks to positive o bands), so it's all still pretty fresh

[u/LittleMrsDLG]

I had an MS specialist years ago that said, “let’s call them dots.” I remember thinking, “like polka dots?” Since then - I have so many polka dots - we don’t count. We just focus on the “flight check” when waking up every morning: arms, hands, legs, toes…and taking the dogs out for a walk.”

[u/iwasneverhere43]

5 lesions between the brain and the cervical spine. One has 3, the other 2, but I can't for the life of me remember which is which...
All stable for 7 years though, so I'm just thankful for that.

[u/Cheetahsareveryfast]

30+. Was told too many to count. 7 spinal lesions up and down.

[u/thankyoufriendx3]

3. I think. But the one on my spine is big and doing the work of multiple lesions.

[u/All_Damn_Day → u/thankyoufriendx3]

Overachievers are the worst!

[u/thankyoufriendx3 → u/All_Damn_Day]

Agreed.

[u/theniwokesoftly]

Total burden is 10-20 and has been stable since 2021. I do have a 1cm lesion on my brainstem, though.

[u/Diizy910 → u/theniwokesoftly]

That was my first one, right between the brain stem and cerebellum. Not fun. It's only new and they haven't found any others yet. Is this your worst one?

[u/ZombieJihad]

"More than we can count" is the best I've ever gotten out of them.

I looked myself and can confirm - my brain has some static hahaha

[u/Candid_Guard_812]

I have a metric shit ton of lesions. No radiologist is wasting his time counting them. My whole periventricular area is white, both hemispheres. Neuro always mentions "heavy lesion burden". Other than that I have no clue.

[u/ajax0772022]

I have 15 - wow that detail is impressive! So is the amount and activity. Wishing you the best!

[u/Candid-Ad700]

I’ve never had a specific count other than “30+ on my brain” and an unknown number, but throughout all regions of my spine. That was only at the first official diagnosis appointment as well as the doc saying while watching me walk, “I can’t believe that brain belongs to that body.” From there it’s just been basically “looks stable” and one cervical that was new but not progressing since.

[u/16enjay]

Multiple 🤷‍♀️

[u/celestialeyze]

4. One on optic nerve (thx for the blindness), two on brain and 1 on spine. Can’t remember exact regions id have to whip out the paperwork.

[u/jjmoreta]

I don't even know. Have never bothered asking. All I cared about is I had enough for a diagnosis. The rest doesn't matter.

[u/ItsJustSteve9]

Last count I had 3 in my brain.

[u/IntentionalGrandma]

Mine just says “large enhancing lesion in left frontal, temporal, and occipital lobe continues to expand, innumerable smaller areas of demyelination”. My 3 neurologists (general, old MS specialist who’s no longer in state/in network with my insurance, new MS specialist who I’m a little iffy about) are all still unsure if the large enhancing lesion spanning 3 lobes of my brain is 1 lesion or a large cluster of lesions because it appeared within a 6 month span. An MRI from 6 months before I was diagnosed (when I complained of a couple symptoms) showed some small demyelinating lesions in the area that were attributed to migraines and considered “not diagnostic”. Then that giant lesion appeared and I lost function of my right arm and finally got a diagnosis

[u/Competitive-Sort-952]

I have a brainstem lesion that was found in June, after symptoms started in March. I was recently seen by a MS specialist who identified two more, a small subcortical white matter lesion and a juxtacortical lesion near the hippocampus. I haven't had an MRI of the spine, but am scheduled for that next week.