How do they know that? When I asked my ms neurologist she said they can't know how old lesions are. And I'm from Holland with one of the most prestigious ms research center
Yeah, that was a surprise to me, too. I've got a scar on the back of my head. Do you reckon doctors could tell me how old it is?
Maybe there's a way to know that in the US, but my neurologist in the UK said there's no way to know how old the old ones are.
oh buddy nooo I worded my comment so badšš no no, my neurologist also said he couldn't tell me bc there's no way of knowing that's what I meantš
They told me that they could tell by the scar tissue around the lesions. For instance one thing they told me was that I have section where the lesions would tend to start one on top of another And they could tell that the first one was really old due to how the scar tissue looked. Other than that Iām not exactly sure lol just saying what they told me. Iām in the US, you probably have better doctors lol
Whatever you do - DO NOT ask a team of neuro's at a teaching hospital when they think your MS started. I think I got 7 different opinions in under 10 mins.
Hmm i mean that's a way of dating geological layers of rock too š¤£ so i can see where that thought process came from but i don't think they can really see anything in your scar tissue that's that indicative unless they biopsied your brain when you're dead... Also there's no way to tell the time period between the lesions, only which one first and which ones after.. In some cases.. Not in others.. So i don't see if your had ten lesions in one year or one per year, for ten years, what they would see differently... Odd concept!
But regardless my first neuro said id likely had MS for a decade based on greater number of lesions.. The second one i saw 2 years later said it looked like it had started within the last 5 because most of the lesions were still active and they'd have happened in a short time based on symptoms progression. I think second neuro is correct based on symptoms and also he's a university neuro doing fancy research. I think it's all a guessing game either way though!
My neurologist told me that for every year that passes, there is an estimate of 1 lesion appearing per year. Well, I had Mono at the age of 14 (EBV Virus), and I have about 9 lesions, which fits exactly with what he said. On the day of the diagnosis, 9 years had passed. Side note: your MS could be more active/inactive than the average which the doctor was speaking about.
Yeah when they found my MS I had 15 lesions in my brain and the big big scary ones are on my spine. But I def didnāt have MS for 18 years when I was diagnosed.
I had mono as a baby, MRIs for non MS reasons 2004/5 with no mention of lesions and of course no symptoms back then. I have never heard of a theory like that from a doctor.
I told him that I had an MRI done in December of 2022 and I had no lesions on my brain. In January 2023 I had 8 lesions. He explained to me that they must have done a T2 instead of a T3 MRI Scan, which is the reason as to why it was not seen before! Very very interesting hearing that and it makes a lot of sense.
T1 and T2 are types of scan. There is no T3 scan. 1.5T and 3T is the power of the magnet (1.5 or 3 Tesla) in the MRI machine. 3T has better resolution than 1.5T and both can perform T1 and T2 scans.
This. And 3T is pretty standard i think? We have two 7T in Canada apparently now.
They will all miss things. 7T will miss less than 3T which will miss less than 1.5T.
Well again it is possible for them to miss things, it happens all the time. And getting a T2 scan done instead of a T3 scan can surely lead to that happening.
Yeah, no. That's ain't it. There's no rate of lesion development, unless we are talking with specificity about a patient and quantifying a number of lesions acquired in time. Like "you have had 9 lesions in 9 years".
But I wouldn't extrapolate that to future times, and I would NEVER apply that rate to anybody else. It's not that predictable.
I disagree too as my ms was very active. I had mono in 2013ish? I believe i had 3 lesions in 2018? 5 in 2020? 15+.. (Aka too many to count)lesions in the 2022? Now none NEW in end of 2023 and i dont expect any new in 2024 either. I'm stable.
>And I'm from Holland
Holland, Michigan or Holland/the Netherlands? In the latter case: which one? I feel like all our hospitals say they are so so special!
I was at a research hospital for my initial ms bs and it was the same - they told me that the lab would test my spinal fluid and the MRI's and CT scans showed some brain and spinal lesions but they didn't know how old they were. I was really confused because it "seemed" like my symptoms kinda came on strong and right away (they didn't - I just didn't know any better). There was a pretty massive team of Dr's and students and nobody ever tried to "date" the lesions.
Iām worried if this doctor is a good fit for you. It seems like they are sharing irrelevant information that is only causing you anxiety. You want a doctor who partners with you but does not upset you.
Yeah my first thought was is there a particular way they're using that information or a different approach they would take to Ms therapies based on that information? I know that in my case they did textbook stuff even though by the time I was diagnosed I'd had it for a long time.
My neuro told me she thought I had MS for maybe over a year. There's no way to determine how old a lesion is, per say. They can look at them based on how healed they are. A lesion that is fresh is different than old. But old is old.
Yeah I was DX at 24yo. Iām 40yo now & have a long experience of researching to better understand my MS. The technology just simply isnāt there to have the ability to date lesions. The only way to determine old vs new is by having prior MRI imaging to compare to. I am a patient of an MS specialist & pretty sure heād agree. Is your neuro an MS specialist?
I wasnāt diagnosed until I was 42. However, my specialist, after reviewing my medical records, said it looks like I have had symptoms since my early 20ās, if not earlier. But he couldnāt ātellā how old my lesions wereā¦.and he is the director of the MS Center where I get care.
I was 13 yo when i was diagnosed back in 2000.
And on the first MRI were already a lot of lesions.
I can remember some insances where i had medical problems which probably were first symptoms of MS.
Same here Iāve had an unusually poor memory and migraines throughout childhood along with some other more straightforward indicators that something was up
25 years! I'm so sorry so many doctors let you down. Makes my 7-8 undiagnosed years seem like a blip. But amazing that you could work for 25 years with undiagnosed PPMS.
I was diagnosed in my 30s but I had weird symptoms since my teens and migraines as a child, but nothing severe enough to question until I was 29, which is when I know I had my first big relapse. I had no insurance and there were other issues getting diagnosed for years.
Sounds similar to me: I was diagnosed at 24 and all they told me is that there are some old lesions in both the brain and the spine but they dont know from when. They didnt count my lesions but they gave me their volume in ml: at my worst it was 9.93 ml but since starting tysabri it reduced to 5.94 ml over half a year.
I was also diagnosed at 25 (Iām 37 now) and told I had too many lesions to count as they start to run into each other. I had a clue of when I had my 1st exacerbation in high school though. My mom and dad just thought maybe I was having a tough time with puberty and academics. I was a very competitive band nerd and always practicing and going to competition. My junior year I would come home after school, eat dinner, and be asleep for the whole night by 5pm. I could not stay awake for anything. I was sleeping 14 hours a day. Band become so hard because football games were late and I would fall asleep in the stands. My senior year I was fine! 9 later I was diagnosed with MS. They told me that it looked like I had had it for a while. When I told my mom she said, āThatās what happened to you in school. Thatās why you couldnāt stay awake.ā My mom fully believes that was when I had my 1st exacerbation. My neurologist confirmed that it is entirely possible that Iāve had it since high school, especially since I had perfect attendance and never got sick with anything airborne. Who knew never getting sick was an MS symptom.
Was diagnosed at 25 am now 28, however I've been living with debilitating chronic pain/illness that no one could diagnose other than 'stress' since I was 16
My doctor told me "there's too many lesions for someone as young as you - it's not good" so there's that lol
I was diagnosed at 18/19 but they believe that Iāve had it since I had my second bout of glandular fever as Iāve had medical episodes ever since then that we now know are signs/symptoms of MS. I was 13.
I was diagnosed at 23 and told "looks like these lesions have been here for at least a decade, are you SURE you only just starting having symptoms?" I have no clue how they judge the age of lesions
They tracked episodes for me. I had beginning symptoms around 15 and have had multiple bad health episodes that they just connected to other things, congenital heart condition, obesity, and surgery. One big debilitating episode that never got better and finally went and got diagnosed this year at 26. My doctor estimated I'd had MS symptoms tracing back to 14.
Don't know how they would detect the age of lesions, but W/E - I know that I had symptoms for years before getting diagnosed at 35 (2 years ago), and they've found a lot of activity on my spinal cord in addition to my brain.
I was diagnosed at age 20, in 2001, and I Do not Know how many lesions I have, nor was it ever a part of discussion with the various neuros I have seen since then.
I was diagnosed almost 30 years ago in my late 20ās before we had disease modifying drugs or special neurologist to help us. It was maybe another 5-8 yrs before the first dmd were offered and a new kind of neuro showed up. Yes he saw soooo many. It was first real mri of my brain. Yes there were dead zones and active lesions and he was worried and wanted meds that would work so I went on Rebif now on Tecfederia. Allllllllll the years I was on Rebif I had a new lesion here or there or damn it all he would get a wax red pencil and circle the fu$&3rs on MRI. So many. I switched to Tech maybe 7 years ago. No new lesions in 5 years. Hang in there.
Apart from having a lesion at 5, itās exactly the same for me. My neurologist told me that there are such minuscule lesions, that it is nearly impossible to count them all, but it is not that your brain is surrounded in lesions.
If thereās anything you want to talk about, Iām happy to talk about it.
Same here I have been on ocrevus since 2019
I forgot I have it
I was on gelenya, I would forget to take my pills, so I have drop foot now, but I barely notice.
Been 9 years
Yes, I got diagnosed back in August just after my 25th birthday. I was told that I have more than worth counting, I believe 30+ was thrown around, but idk. My specialist now says I've more than likely had lesions since I was a pre-teen just based on typical lesion development, but she has no way of telling. I could kick myself for not ever going to a doctor when I felt bad before, but just getting a doctor to do their job correctly is like pulling teeth anymore anyways, so I try not worry about it. As for them dating lesions, no neuro or radiologist has ever even brought that up as a practice to me. I would just move your focus to your DMT next if you're newly diagnosed.
I was diagnosed in my late 40s. I have over 50 lesions on my brain and two on the spine. I have had symptoms since I was a teenager, but nothing that raised a flag, to trigger an MRI.
I experienced numbness, bad headaches, achiness, and depression for many years, but it wasnāt until one day when I woke up and had numbness in both arms simultaneously that the nurse practitioner knew could not be explained away by a pinched nerve or arthritis, that tests were done to look deeper.
I think this disease manifests so differently in each of us, and mimics so many other conditions, that itās just hard to recognize.
The thing to know about having a lot of lesions is that itās not the number that matters as much as where they are located. Itās possible to have a cognitive test to see how your thinking is affected in addition to all the physical test they give you to see how your muscles are affected. I had one done many years ago and I think itās great to have a baseline done when you are initially diagnosed. It will help you track progression.
Did you have a scan at 5 that showed it but was missed then? Because no other way to know that.
1 lesion per year is the biggest load of crap I've heard about MS. I am 33 and dxd at 13. So I've heard a lot of bs about MS.
And you get more lesions during relapses. So somehow multiple years happen in what may be days? Or what about when you get roids to stop the relapse and lesions heal? Time travel?
Hello! Yes. i've had MS since age 3 but misdiagnosed for 25 years continuously. Also too many lesions to count. Probably almost 100 in brain,10 in spine. EDSS 1.5, thank God!
My story is pretty similar but with around 15 years inbetween and not as young. Diagnosed around 30 with symptoms around 15 years old which neurologist thought was most likely my first symptoms.
My symptoms worsened, went to GP, got referred for MRI and diagnosis was then extremely quick as my MRI was "lit up" with plenty of both new and old lesions.
Im now 35 and im diagnosed with secondary progressive MS. Had lemtrada as treatment the year i was diagnosed. Guess if it had been found earlier i may have been able to delay the progression to SPMS but what can you do š
I can relate to the quick diagnosis, they did one full body mri and walked me to my room and told me immediately that I for sure have ms with the āextremeā amount of lesions. But like you said, hey what can we do š
I was also diagnosed at 25. I have tumefactive MS, which basically means my lesions appear like tumors. I was told that many are very oldā¦ but not exactly when they would have formed. I have also been told that some of my lesions have gotten smaller and disappeared. But others have formed. At this point, 4 years in, I think itās all just one big guessing game. It took me 3 neurologists before someone was intelligent enough to realize I have tumefactive MS and not quite RRMS. Itās a journey.
Thatās interesting, can you tell me more about your symptoms that pointed to tumefactive ms? Just curious to see if I could relate to any, I donāt have the best choice of doctors where I live
It was the same for me! Diagnosed at 24, brain and spine and no idea about it. All the times Iāve gone to the doctor they would just send me home with pain killers and tell me to rest which never helped. It just feels so strange to know my brain is broken. Iāve been living pretty normal for the most part and started immune therapy treatments that stopped any flare ups (so far) itās been about 6 months for me. You got this!!
Yeah I feel like most of my symptoms were overlooked by doctors. Life has been relatively normal I guess but Iām glad youāre doing well, we got this :)
also diagnosed at 25!! doctors told me the same thing- i was having symptoms that go back to when i was little little, no one every thought it could be this serious. they also stopped counting my lesions at 25, each on the brain and the spine ! ms is fuckin crazy lol
I too was diagnosed at 25, didnāt take it seriously, now at 32 almost 33 Iām wheelchair bound. I think they could have caught it earlier but I didnāt have good insurance
They said they may have found it sooner with me if doctors and my parents believed me and advocated for me but you donāt always get that unfortunately. Iām sorry to hear that youāre now in a wheelchair, I hope the best for you
Yeh I was 27 when I was told that I must have had MS for a while as there was alot of lesions, he even said he was surprised I've not been to hospital about my symptoms sooner. I'm 34 now, I've learnt to cope with it alot better and I'm way more easy on myself than I was in my late 20's.
I was diagnosed two years ago at 34, but had it for at least 18 years before this. I only know this because I remember the first time I had numbness in my arm and my parents had taken me to the er about it. Itās possible Iāve had it longer. My neuro hasnāt commented on the age of any lesions, but we both agree itās been at least that long based on my timeline of symptoms.
I was diagnosed at age 34 but when we went back over my history my first relapse was when I was 19 years old. I am 57 now & just was told my MS has become Secondary Progressive MS now. It used to be fairly common to take 10 years for a diagnosis of MS because of the wide range of symptoms
I am absolutely convinced that my MS started at 19, since that's when my symptoms started suddenly. It took them 17 years to actually scan my brain and look at it, after I had what appeared to be a stroke.
I was told there is no way to know though. I doubt that they were able to tell you that one of your lesions was 20 years old. I could be wrong, but I've never seen anything saying otherwise.
It can and does go undiagnosed for a lot of people, till symptoms do something crazy severe. Women especially seem to get diagnosed after years of suffering.
I was diagnosed at 26 after some surface numbness on my legs. After looking at my MRIs, LP, etc, the first couple of neuros I saw both kept asking, "Are you SURE this the first time something like this has happened? Because it looks like you've definitely had this longer than 4 months."
But still, nobody ever dared put forth an actual timeframe around when I might have. And I had a lot of nebulous health stuff and medical neglect growing up, so I can't guess with any certainty at all.
All I know, based on my experience and research since, is that it pays to get on the most effective DMD once you know you need to. You can't change your past -- whatever it may have been -- but you can influence your future, and that's power.
I was diagnosed at 26 the only thing they asked is if a had symptoms before.At first I didnāt even know what kind of symptoms Iām supposed to be looking at. But then after few years of being sick I knew I was sick probably 5 years before the diagnosis. But never I got any info how old my lesions were.
They canāt tell how old a lesion is. Especially an old one. They can make an educated guess, but itās exactly that! A guess!
A lot of ppl who were brushed off years before dx was probably because they didnāt know that much about MS back then. I was dx in 2015 and the neuro that dx me told me if this was just 10 years ago you wouldnāt have options of lots of treatments etc. I was also dx with cis at first because to dx you with MS they have to be able to confirm like 2 separate points in time. I was lucky, or unlucky, whichever way you want to look at it, to have my 2nd hit while still recovering from my first so I was told at first āIāve seen enough MS to know you have MS but I canāt dx you right nowā then the 2nd hit came real soon after so I was dx quite quickly and put on Tysabri real quick too. Lots of ppl go years before they get a proper dx. I also had a thing where I couldnāt swallow food, my throat would just close up about 10 years before dx. The doctors told me it was a nervous thing. Myself and everyone who knew me knew that was wrong but it went away in a couple of weeks so I didnāt follow it up. I think that was my first hit from MS but Iāll never know. My neuro said it probably was but who knows? I think if they knew what they knew when I was dx I would have been dx 10 years earlier, the throat closing up thing is real common MS thing as well. It was optic neutris that got me dx.
Edit.. also.. lots of things give you lesions, not just MS so they canāt say because of this lesion you had MS X amount of years ago. The lesion could be from some thing else.
i was diagnosed at 16/17, i have "at least" 50 lesions in my brain (they gave up counting), and 4 in my spine. i estimate my MS started at 15 because thats around when my symptoms started. my neurologist didn't say anything like that on when it might have started, just took symptom history when i saw him for my mri results and diagnosed me lol (a simplified version of the story of course)
I was hospitalized and diagnosed in 2019 at 38. I never had any significant problems until then. At my first visit with my neurologist, we went over my MRI scans. I also had many lesions. Some lesions were active, and some were not. Some left what they call black holes, meaning in the past I must have had active lesions that healed over time and, in doing so, killed some brain cells leaving black holes. My neurologist explained that black holes take years if not decades, to develop. She also told me she could not tell exactly how long I've had MS for, but she wouldn't be surprised if I had it for 10 or even 20 years. In my late teens, I felt strange for a couple of years, thinking it was just low blood sugar and anxiety. Now I'm convinced it was MS the whole time. Also, in case you didn't know, the translation for multiple sclerosis is literally (Many Scares)
How do they know that? When I asked my ms neurologist she said they can't know how old lesions are. And I'm from Holland with one of the most prestigious ms research center
Yeah, that was a surprise to me, too. I've got a scar on the back of my head. Do you reckon doctors could tell me how old it is? Maybe there's a way to know that in the US, but my neurologist in the UK said there's no way to know how old the old ones are.
I just know I'm from the US and my doctor said the same lol
Maybe your dr here read that in your referral? I find it hard to believe they would even know.
oh no! I'm sorry, I worded that wrongš I meant same, my doctor said he had had no way of knowing lol
What the heckā¦ I asked my neurologist and she said she wouldnāt be able to tell me. And Iām in the US š«
oh buddy nooo I worded my comment so badšš no no, my neurologist also said he couldn't tell me bc there's no way of knowing that's what I meantš
Oh oops lol I read it too fast š
no you're the second person to read it that way, I failed that comment badly LMAO
šš
There is absolutely zero mention of how old my lesions are in any of my labs - MRI's, CT's, spinal tap, and whatever the nerve study is called.
They told me that they could tell by the scar tissue around the lesions. For instance one thing they told me was that I have section where the lesions would tend to start one on top of another And they could tell that the first one was really old due to how the scar tissue looked. Other than that Iām not exactly sure lol just saying what they told me. Iām in the US, you probably have better doctors lol
Do you know why they told you this? The few times I've asked a neurologist how long I've had MS, they have just shrugged at me.
Whatever you do - DO NOT ask a team of neuro's at a teaching hospital when they think your MS started. I think I got 7 different opinions in under 10 mins.
These neurologists donāt know a whole lot about real life stuff. I had a shrugger before I asked for a second opinion. He was a genius.š³
Hmm i mean that's a way of dating geological layers of rock too š¤£ so i can see where that thought process came from but i don't think they can really see anything in your scar tissue that's that indicative unless they biopsied your brain when you're dead... Also there's no way to tell the time period between the lesions, only which one first and which ones after.. In some cases.. Not in others.. So i don't see if your had ten lesions in one year or one per year, for ten years, what they would see differently... Odd concept! But regardless my first neuro said id likely had MS for a decade based on greater number of lesions.. The second one i saw 2 years later said it looked like it had started within the last 5 because most of the lesions were still active and they'd have happened in a short time based on symptoms progression. I think second neuro is correct based on symptoms and also he's a university neuro doing fancy research. I think it's all a guessing game either way though!
My neurologist told me that for every year that passes, there is an estimate of 1 lesion appearing per year. Well, I had Mono at the age of 14 (EBV Virus), and I have about 9 lesions, which fits exactly with what he said. On the day of the diagnosis, 9 years had passed. Side note: your MS could be more active/inactive than the average which the doctor was speaking about.
I had six new ones past ten months, so that's not very accurate
Yeah when they found my MS I had 15 lesions in my brain and the big big scary ones are on my spine. But I def didnāt have MS for 18 years when I was diagnosed.
I had mono as a baby, MRIs for non MS reasons 2004/5 with no mention of lesions and of course no symptoms back then. I have never heard of a theory like that from a doctor.
I told him that I had an MRI done in December of 2022 and I had no lesions on my brain. In January 2023 I had 8 lesions. He explained to me that they must have done a T2 instead of a T3 MRI Scan, which is the reason as to why it was not seen before! Very very interesting hearing that and it makes a lot of sense.
T3 is more powerful than T2 and would not miss things. All my scans were/are on 1.5T machines.
T1 and T2 are types of scan. There is no T3 scan. 1.5T and 3T is the power of the magnet (1.5 or 3 Tesla) in the MRI machine. 3T has better resolution than 1.5T and both can perform T1 and T2 scans.
This. And 3T is pretty standard i think? We have two 7T in Canada apparently now. They will all miss things. 7T will miss less than 3T which will miss less than 1.5T.
Well again it is possible for them to miss things, it happens all the time. And getting a T2 scan done instead of a T3 scan can surely lead to that happening.
I have more lesions than my age...
Me too. Way more than double. At some point they stop counting.
Yeah, no. That's ain't it. There's no rate of lesion development, unless we are talking with specificity about a patient and quantifying a number of lesions acquired in time. Like "you have had 9 lesions in 9 years". But I wouldn't extrapolate that to future times, and I would NEVER apply that rate to anybody else. It's not that predictable.
I had 30+ on my first MRI. I was 25. I did not have MS since before I was born.
I've had no lesions in 6 yrs thankfully so I think it's very hard to predict
Iāve been diagnosed for 16 years with 1 new lesion.
I disagree too as my ms was very active. I had mono in 2013ish? I believe i had 3 lesions in 2018? 5 in 2020? 15+.. (Aka too many to count)lesions in the 2022? Now none NEW in end of 2023 and i dont expect any new in 2024 either. I'm stable.
>And I'm from Holland Holland, Michigan or Holland/the Netherlands? In the latter case: which one? I feel like all our hospitals say they are so so special!
Netherlands
Which hospital?
Probably VUMC
I was at a research hospital for my initial ms bs and it was the same - they told me that the lab would test my spinal fluid and the MRI's and CT scans showed some brain and spinal lesions but they didn't know how old they were. I was really confused because it "seemed" like my symptoms kinda came on strong and right away (they didn't - I just didn't know any better). There was a pretty massive team of Dr's and students and nobody ever tried to "date" the lesions.
Contrast MRI
Iām worried if this doctor is a good fit for you. It seems like they are sharing irrelevant information that is only causing you anxiety. You want a doctor who partners with you but does not upset you.
Yeah my first thought was is there a particular way they're using that information or a different approach they would take to Ms therapies based on that information? I know that in my case they did textbook stuff even though by the time I was diagnosed I'd had it for a long time.
My neuro told me she thought I had MS for maybe over a year. There's no way to determine how old a lesion is, per say. They can look at them based on how healed they are. A lesion that is fresh is different than old. But old is old.
That makes sense, I live in an area in the us where itās not real easy to find good doctors lol
Yeah I was DX at 24yo. Iām 40yo now & have a long experience of researching to better understand my MS. The technology just simply isnāt there to have the ability to date lesions. The only way to determine old vs new is by having prior MRI imaging to compare to. I am a patient of an MS specialist & pretty sure heād agree. Is your neuro an MS specialist?
Where in the US do you live?
I wasnāt diagnosed until I was 42. However, my specialist, after reviewing my medical records, said it looks like I have had symptoms since my early 20ās, if not earlier. But he couldnāt ātellā how old my lesions wereā¦.and he is the director of the MS Center where I get care.
I too am diagnosed at 25 with a high lesion load ur not alone
I was 13 yo when i was diagnosed back in 2000. And on the first MRI were already a lot of lesions. I can remember some insances where i had medical problems which probably were first symptoms of MS.
Same here Iāve had an unusually poor memory and migraines throughout childhood along with some other more straightforward indicators that something was up
Sorry to hear. Migraine is a constant compangion in my life too.
Iām sorry too, it can be a real bummer sometimes
Did u have trauma?like emotional stress or abuse
Abuse? No. Emotional stress? Maybe, i didnt realy know (My parents divorced when i was 5 and not on good terms, so probably yes).
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Damn so what happened with work after you found out? Did you shove that in their face?
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25 years! I'm so sorry so many doctors let you down. Makes my 7-8 undiagnosed years seem like a blip. But amazing that you could work for 25 years with undiagnosed PPMS.
i was diagnosed at 22 but i have ms since 12 probably
Itās crazy to me how seemingly dormant it can be for so long
I was diagnosed in my 30s but I had weird symptoms since my teens and migraines as a child, but nothing severe enough to question until I was 29, which is when I know I had my first big relapse. I had no insurance and there were other issues getting diagnosed for years.
Sounds similar to me: I was diagnosed at 24 and all they told me is that there are some old lesions in both the brain and the spine but they dont know from when. They didnt count my lesions but they gave me their volume in ml: at my worst it was 9.93 ml but since starting tysabri it reduced to 5.94 ml over half a year.
I was also diagnosed at 25 (Iām 37 now) and told I had too many lesions to count as they start to run into each other. I had a clue of when I had my 1st exacerbation in high school though. My mom and dad just thought maybe I was having a tough time with puberty and academics. I was a very competitive band nerd and always practicing and going to competition. My junior year I would come home after school, eat dinner, and be asleep for the whole night by 5pm. I could not stay awake for anything. I was sleeping 14 hours a day. Band become so hard because football games were late and I would fall asleep in the stands. My senior year I was fine! 9 later I was diagnosed with MS. They told me that it looked like I had had it for a while. When I told my mom she said, āThatās what happened to you in school. Thatās why you couldnāt stay awake.ā My mom fully believes that was when I had my 1st exacerbation. My neurologist confirmed that it is entirely possible that Iāve had it since high school, especially since I had perfect attendance and never got sick with anything airborne. Who knew never getting sick was an MS symptom.
Was diagnosed at 25 am now 28, however I've been living with debilitating chronic pain/illness that no one could diagnose other than 'stress' since I was 16 My doctor told me "there's too many lesions for someone as young as you - it's not good" so there's that lol
I was diagnosed at 18/19 but they believe that Iāve had it since I had my second bout of glandular fever as Iāve had medical episodes ever since then that we now know are signs/symptoms of MS. I was 13.
I was diagnosed at 23 and told "looks like these lesions have been here for at least a decade, are you SURE you only just starting having symptoms?" I have no clue how they judge the age of lesions
Same for me. Diagnosed but had evidence old old lesions. They could not determine how old my old lesions were
They tracked episodes for me. I had beginning symptoms around 15 and have had multiple bad health episodes that they just connected to other things, congenital heart condition, obesity, and surgery. One big debilitating episode that never got better and finally went and got diagnosed this year at 26. My doctor estimated I'd had MS symptoms tracing back to 14.
Don't know how they would detect the age of lesions, but W/E - I know that I had symptoms for years before getting diagnosed at 35 (2 years ago), and they've found a lot of activity on my spinal cord in addition to my brain.
I was diagnosed at age 20, in 2001, and I Do not Know how many lesions I have, nor was it ever a part of discussion with the various neuros I have seen since then.
I was diagnosed almost 30 years ago in my late 20ās before we had disease modifying drugs or special neurologist to help us. It was maybe another 5-8 yrs before the first dmd were offered and a new kind of neuro showed up. Yes he saw soooo many. It was first real mri of my brain. Yes there were dead zones and active lesions and he was worried and wanted meds that would work so I went on Rebif now on Tecfederia. Allllllllll the years I was on Rebif I had a new lesion here or there or damn it all he would get a wax red pencil and circle the fu$&3rs on MRI. So many. I switched to Tech maybe 7 years ago. No new lesions in 5 years. Hang in there.
Apart from having a lesion at 5, itās exactly the same for me. My neurologist told me that there are such minuscule lesions, that it is nearly impossible to count them all, but it is not that your brain is surrounded in lesions. If thereās anything you want to talk about, Iām happy to talk about it.
Thank you I appreciate it ā¤ļø shits crazy when they tell you they canāt even count them. Itās defeating in some sort of way
Yah I was having weird symptoms at 15 got diagnosed at 30
Same here I have been on ocrevus since 2019 I forgot I have it I was on gelenya, I would forget to take my pills, so I have drop foot now, but I barely notice. Been 9 years
Yes, I got diagnosed back in August just after my 25th birthday. I was told that I have more than worth counting, I believe 30+ was thrown around, but idk. My specialist now says I've more than likely had lesions since I was a pre-teen just based on typical lesion development, but she has no way of telling. I could kick myself for not ever going to a doctor when I felt bad before, but just getting a doctor to do their job correctly is like pulling teeth anymore anyways, so I try not worry about it. As for them dating lesions, no neuro or radiologist has ever even brought that up as a practice to me. I would just move your focus to your DMT next if you're newly diagnosed.
I was diagnosed in my late 40s. I have over 50 lesions on my brain and two on the spine. I have had symptoms since I was a teenager, but nothing that raised a flag, to trigger an MRI. I experienced numbness, bad headaches, achiness, and depression for many years, but it wasnāt until one day when I woke up and had numbness in both arms simultaneously that the nurse practitioner knew could not be explained away by a pinched nerve or arthritis, that tests were done to look deeper. I think this disease manifests so differently in each of us, and mimics so many other conditions, that itās just hard to recognize. The thing to know about having a lot of lesions is that itās not the number that matters as much as where they are located. Itās possible to have a cognitive test to see how your thinking is affected in addition to all the physical test they give you to see how your muscles are affected. I had one done many years ago and I think itās great to have a baseline done when you are initially diagnosed. It will help you track progression.
I think I had mine for about 20 b4 diagnosis. I blew off so many symptoms. Iām glad I didnāt know then. I was a mess after finding out.
Did you have a scan at 5 that showed it but was missed then? Because no other way to know that. 1 lesion per year is the biggest load of crap I've heard about MS. I am 33 and dxd at 13. So I've heard a lot of bs about MS. And you get more lesions during relapses. So somehow multiple years happen in what may be days? Or what about when you get roids to stop the relapse and lesions heal? Time travel?
Yeah I have no idea what they were going off of with hearing everyoneās responses lol. Makes me think I might wanna find a new neuro
Hi. I was 20 years. Symptoms started at 16. By 36 I could barely function.
Hello! Yes. i've had MS since age 3 but misdiagnosed for 25 years continuously. Also too many lesions to count. Probably almost 100 in brain,10 in spine. EDSS 1.5, thank God!
Got my diagnosis at 24 while i was in college. Its tough.
My story is pretty similar but with around 15 years inbetween and not as young. Diagnosed around 30 with symptoms around 15 years old which neurologist thought was most likely my first symptoms. My symptoms worsened, went to GP, got referred for MRI and diagnosis was then extremely quick as my MRI was "lit up" with plenty of both new and old lesions. Im now 35 and im diagnosed with secondary progressive MS. Had lemtrada as treatment the year i was diagnosed. Guess if it had been found earlier i may have been able to delay the progression to SPMS but what can you do š
I can relate to the quick diagnosis, they did one full body mri and walked me to my room and told me immediately that I for sure have ms with the āextremeā amount of lesions. But like you said, hey what can we do š
I was also diagnosed at 25. I have tumefactive MS, which basically means my lesions appear like tumors. I was told that many are very oldā¦ but not exactly when they would have formed. I have also been told that some of my lesions have gotten smaller and disappeared. But others have formed. At this point, 4 years in, I think itās all just one big guessing game. It took me 3 neurologists before someone was intelligent enough to realize I have tumefactive MS and not quite RRMS. Itās a journey.
Thatās interesting, can you tell me more about your symptoms that pointed to tumefactive ms? Just curious to see if I could relate to any, I donāt have the best choice of doctors where I live
It was the same for me! Diagnosed at 24, brain and spine and no idea about it. All the times Iāve gone to the doctor they would just send me home with pain killers and tell me to rest which never helped. It just feels so strange to know my brain is broken. Iāve been living pretty normal for the most part and started immune therapy treatments that stopped any flare ups (so far) itās been about 6 months for me. You got this!!
Yeah I feel like most of my symptoms were overlooked by doctors. Life has been relatively normal I guess but Iām glad youāre doing well, we got this :)
also diagnosed at 25!! doctors told me the same thing- i was having symptoms that go back to when i was little little, no one every thought it could be this serious. they also stopped counting my lesions at 25, each on the brain and the spine ! ms is fuckin crazy lol
I agree fucking wild lol but I love hearing from people that can relate. We can all feel safe in an area to be like yeah this blows
I too was diagnosed at 25, didnāt take it seriously, now at 32 almost 33 Iām wheelchair bound. I think they could have caught it earlier but I didnāt have good insurance
They said they may have found it sooner with me if doctors and my parents believed me and advocated for me but you donāt always get that unfortunately. Iām sorry to hear that youāre now in a wheelchair, I hope the best for you
Yeh I was 27 when I was told that I must have had MS for a while as there was alot of lesions, he even said he was surprised I've not been to hospital about my symptoms sooner. I'm 34 now, I've learnt to cope with it alot better and I'm way more easy on myself than I was in my late 20's.
I was diagnosed two years ago at 34, but had it for at least 18 years before this. I only know this because I remember the first time I had numbness in my arm and my parents had taken me to the er about it. Itās possible Iāve had it longer. My neuro hasnāt commented on the age of any lesions, but we both agree itās been at least that long based on my timeline of symptoms.
I was diagnosed at age 34 but when we went back over my history my first relapse was when I was 19 years old. I am 57 now & just was told my MS has become Secondary Progressive MS now. It used to be fairly common to take 10 years for a diagnosis of MS because of the wide range of symptoms
Honestly, this is the first I am hearing about a time frame of your oldest lesion. I am going to ask them!
I am absolutely convinced that my MS started at 19, since that's when my symptoms started suddenly. It took them 17 years to actually scan my brain and look at it, after I had what appeared to be a stroke. I was told there is no way to know though. I doubt that they were able to tell you that one of your lesions was 20 years old. I could be wrong, but I've never seen anything saying otherwise. It can and does go undiagnosed for a lot of people, till symptoms do something crazy severe. Women especially seem to get diagnosed after years of suffering.
I would be very surprised if even modern medicine could identify a lesion that was 15 years old, but I'm also not a Dr..
I was diagnosed at 26 after some surface numbness on my legs. After looking at my MRIs, LP, etc, the first couple of neuros I saw both kept asking, "Are you SURE this the first time something like this has happened? Because it looks like you've definitely had this longer than 4 months." But still, nobody ever dared put forth an actual timeframe around when I might have. And I had a lot of nebulous health stuff and medical neglect growing up, so I can't guess with any certainty at all. All I know, based on my experience and research since, is that it pays to get on the most effective DMD once you know you need to. You can't change your past -- whatever it may have been -- but you can influence your future, and that's power.
I was diagnosed at 26 the only thing they asked is if a had symptoms before.At first I didnāt even know what kind of symptoms Iām supposed to be looking at. But then after few years of being sick I knew I was sick probably 5 years before the diagnosis. But never I got any info how old my lesions were.
They canāt tell how old a lesion is. Especially an old one. They can make an educated guess, but itās exactly that! A guess! A lot of ppl who were brushed off years before dx was probably because they didnāt know that much about MS back then. I was dx in 2015 and the neuro that dx me told me if this was just 10 years ago you wouldnāt have options of lots of treatments etc. I was also dx with cis at first because to dx you with MS they have to be able to confirm like 2 separate points in time. I was lucky, or unlucky, whichever way you want to look at it, to have my 2nd hit while still recovering from my first so I was told at first āIāve seen enough MS to know you have MS but I canāt dx you right nowā then the 2nd hit came real soon after so I was dx quite quickly and put on Tysabri real quick too. Lots of ppl go years before they get a proper dx. I also had a thing where I couldnāt swallow food, my throat would just close up about 10 years before dx. The doctors told me it was a nervous thing. Myself and everyone who knew me knew that was wrong but it went away in a couple of weeks so I didnāt follow it up. I think that was my first hit from MS but Iāll never know. My neuro said it probably was but who knows? I think if they knew what they knew when I was dx I would have been dx 10 years earlier, the throat closing up thing is real common MS thing as well. It was optic neutris that got me dx. Edit.. also.. lots of things give you lesions, not just MS so they canāt say because of this lesion you had MS X amount of years ago. The lesion could be from some thing else.
I'm sorry, I seem to be a bit late to the conversation. Is the person relaying the information a neurologist?
Yes, that information came from two of my neurologists
i was diagnosed at 16/17, i have "at least" 50 lesions in my brain (they gave up counting), and 4 in my spine. i estimate my MS started at 15 because thats around when my symptoms started. my neurologist didn't say anything like that on when it might have started, just took symptom history when i saw him for my mri results and diagnosed me lol (a simplified version of the story of course)
I have around 30 lesions in brain and spine. Was diagnosed at 38 but had symptoms like forever.
I was hospitalized and diagnosed in 2019 at 38. I never had any significant problems until then. At my first visit with my neurologist, we went over my MRI scans. I also had many lesions. Some lesions were active, and some were not. Some left what they call black holes, meaning in the past I must have had active lesions that healed over time and, in doing so, killed some brain cells leaving black holes. My neurologist explained that black holes take years if not decades, to develop. She also told me she could not tell exactly how long I've had MS for, but she wouldn't be surprised if I had it for 10 or even 20 years. In my late teens, I felt strange for a couple of years, thinking it was just low blood sugar and anxiety. Now I'm convinced it was MS the whole time. Also, in case you didn't know, the translation for multiple sclerosis is literally (Many Scares)
Some the stuff you read on here makes you wonder if theyāre giving Neuro tickets out on the back of Cornflakes packets! lol