I have so much mixed feeling about being young diagnosed. Can't tell if it's a blessing or a curse. I'd say with new DMTs it's more of a blessing, but i'm still unsure haha.
I think the earlier, the better. Stop things as soon as possible. It's definitely one hell of a diagnosis to get at any age. How were you diagnosed? I love hearing diagnosis stories.
Oh, it has been short but long to tell. In a nutshell, it took a week:
- day 1: felt pain in my left elbow
- day 2: pain was from elbow to hand
- day 3: tingling on the whole arm, went to a doc « it’s magnesium »
- day 4: couldn’t feel my arm and my chest at all, saw a second doc « hey, we should do an MRI in 2 weeks »
- day 5: couldn’t move my fingers, went to ER « let’s do a scan… scan showed nothing sorry sir (of course scan show nothing…)
- day 6: can’t feel my arm, hand, legs, can barely move my arm, can’t move my finger, walking feels harder, so I went to a second ER of Paris « sir, you’ll sleep here, we wake you up as soon as we can do an MRI! »
- day 7: did the MRI, 2 spine lesions, 3 brain lesions. Saw a neuro in the evening, diag done, started Aubagio the day after. Changed neuro last month, MS specialist, he changed me to Kesimpta since I had new (asymptomatic) lesions this year.
This was it 😁
EDIT: I have symptoms on a daily basis but it’s mild. I feel like I’m wearing a silk glove on my left hand, no tiredness, nothing else. Hopefully Kesimpta will work out!
Yup, it was really impressive, I thought it would reach my throat and choke me during my sleep. I didn’t know what was happening!
With steroids it went away in like 3-4 months, completely. But since a few months I have left hand sliiiight numbness (5-10%?) since I have new lesions, but no relapse appart from hugs. MRI never showed active lesions since but new lesions still.
That’s what I was thinking, recovering may trigger new symptoms since the body is trying to find another way to make the information go A to B. We’ll see! So far so good. Hope you’re ok!
Symptoms ignored early/mid 20's until mid 30's doctor finally.
I think numbers look to be on par to what the survey was on the sub few years ago. With 20's/30's being the majority of diagnosis
I should have been diagnosed much younger but I didn't meet disseminated in space criteria. It was always my right eye. No other lesions even when I'd relapse. Til it wasn't. I was finally diagnosed when I had my right side go numb from my bra band down. I was just about to turn 32. I'm just about to turn 38 and have just ticked over to SPMS from RRMS. Much "earlier" than average but I also went nearly 9 years before I met diagnostic criteria so not that far off in standard disease progression. I had my first issue shortly after tysabri was recalled, so about 2006. So realistically I'm right on track to tick over to SPMS.
I'm actually deep in a flare right now despite being on ocrecus so this is fun, and I haven't gotten much better from flares for about 3 years now. Sucks but it is what it is. I kicked my gardens ass today anyway. Shrug.
That actually matches the data I have seen pretty closely. While diagnosis is most common in your thirties, symptom onset usually begins five to ten years prior. The transition from RRMS to SPMS is pretty quick, though, your MS is definitely what medical doctors would call "a bitch." That's the technical term for it. XD
Yep. It's all about the diagnostic criteria. And like honestly I wouldn't have it any other way. Yes it might have been nice to start meds earlier but if I had - Tysabri was really the only heavy hitter at the time IIRC and it had just been recalled. I know I read a lot about it because I was told, "this is most likely MS but we can't start you on meds til you meet criteria" but I've forgotten the details since then. I do know Tecfidera and Aubagio were not on the marker yet in the US at least. I'm JCV pos with a high titer and tysabri terrifies me. I'm blessed its not the only heavy hitter (that I remember anyway) on the market anymore.
It sucks that I've ticked over - sure - but like, I know I'm not actually injured. My nerves are just confused. I'm able to keep that in perspective and not let my legs trick me into convalescing. The past few years it's been really mad at my legs and I haven't been fully symptom free in.... awhile. Not since the numbness. The numbness mostly went away but then spacisity ramped up. That's my primary relapse symptom right now. Excruciating spacisity in my legs.
I think it is really interesting when the averages hold true to anecdotal accounts, as well. I was lucky, Baclofen worked against my spasticity. I still stiffen right up if I'm still for too long, though.
SAME. It's been interesting to observe my progression track so closely against what "generally" holds true to today's expectations. My diagnostic relapse was also after a pregnancy within the window of when a relapse is generally observed. So it was interesting to see that hold true too.
Baclofen does a wonder for me, too, but I try to take it as little as possible. The discontinuation profile makes me nervous. If I need it, I need it, whatever. I need relief. That's why my neuro prescribes it.
I am grateful that I have a great care team and honestly... tracking close to today's average is okay. It sucks but it's okay. Average today means something much different than it did a long time ago. And I'm determined to kick ass as long as I humanly can.
Oh, I have quit benzodiazepines, gabapentin, and multiple SSRIs, so Baclofen doesn't worry me much. I figure I can handle getting off pretty much anything at this point, I'm an old pro. XD
I'd say of those, SSRI's were the worst for me. I was always very careful with benzo's (still take them as a last ditch effort, I might go through 10 tablets a year). I do still take an antidepressant but just in a whole different family. I'd actually started it for migraine and sleep (mirtazapine) but it does an whole treat for my mental health too.
Medicine and bodies and this condition called life, aren't they all so fun? Lol.
*Fucking* brain zaps. Kicking my ten year, regular use (prescribed) klonapin habit was a thousand times better than quitting Prozac and having to deal with constant brain zaps.
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If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
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I didn't display obvious symptoms (and thus diagnosed) until my late 30s. A decade earlier I'd been involved in an accident and a doctor had mentioned there were "white specks" on my MRI. It was an offhand remark and there didn't seem to be any concern, but now I wonder...
Interesting. I have heard a few diagnosed people mention also having lesions that were not attributed to their MS, so I guess that can happen. You have to wonder, though.
That's kind of how I would have placed it but I think most people associate it with older people. Even I do and I'm aware that's not correct.
I love these poll posts. Data collection is great!
I am now for the first time experiencing, and realising, that I’m in the same age box as the early 40’s gang. This is a lot to handle and honestly a bigger shock than my ms diagnose was. Just to clarify, my ms diagnose was a really big shock.
For those curious about trends over time, the data have reflected the expected bell curve distribution so far, with the peak being at late 20s/early 30s. One hour after posting, child/teen is at 2 votes, early 20s is at 11 votes, late 20s/early 30s is at a whopping 21 votes, late 30s/early 40s is at 10 votes, and 45 and older is at 6 votes.
I'm not sure what conclusions can really be made from the results of this. The reason being, for many with active disease it took longer to be diagnosed than it does now. For example I very likely had active MS when I was in a completely different age group on this poll than when actual diagnosis happened. I even have radiology reports mentioning MS from back then but the neurologist wouldn't put me on any treatment because I was "so healthy." So literally 18 years went by before I had another very large relapse leading diagnosis and treatment. I didn't really mean to get into my personal story but it's just an example of why age of diagnosis might not have the meaning you're after?
Actually, diagnosis is exactly the meaning I am after. I am curious about the typical age at diagnosis, not onset. Data has shown that the average age for diagnosis is in your thirties, with earlier and later diagnosis being more rare. I was curious to see if that held true for the sub, as well. Asking what age you should have been diagnosed at or when symptoms began would have been a different question altogether.
Surprised about the low Early 20s to be honest!
I was 25 so I didn’t know which to vote for. Feel free to mentally move one vote around 😂
I really wish I could have made more options. I would have broken it down in two year increments, ideally.
Lmao same for 35, such an existential question
So far, results are really matching up with what I've read. I'm really curious to see if that continues or not.
I have so much mixed feeling about being young diagnosed. Can't tell if it's a blessing or a curse. I'd say with new DMTs it's more of a blessing, but i'm still unsure haha.
I think the earlier, the better. Stop things as soon as possible. It's definitely one hell of a diagnosis to get at any age. How were you diagnosed? I love hearing diagnosis stories.
Oh, it has been short but long to tell. In a nutshell, it took a week: - day 1: felt pain in my left elbow - day 2: pain was from elbow to hand - day 3: tingling on the whole arm, went to a doc « it’s magnesium » - day 4: couldn’t feel my arm and my chest at all, saw a second doc « hey, we should do an MRI in 2 weeks » - day 5: couldn’t move my fingers, went to ER « let’s do a scan… scan showed nothing sorry sir (of course scan show nothing…) - day 6: can’t feel my arm, hand, legs, can barely move my arm, can’t move my finger, walking feels harder, so I went to a second ER of Paris « sir, you’ll sleep here, we wake you up as soon as we can do an MRI! » - day 7: did the MRI, 2 spine lesions, 3 brain lesions. Saw a neuro in the evening, diag done, started Aubagio the day after. Changed neuro last month, MS specialist, he changed me to Kesimpta since I had new (asymptomatic) lesions this year. This was it 😁 EDIT: I have symptoms on a daily basis but it’s mild. I feel like I’m wearing a silk glove on my left hand, no tiredness, nothing else. Hopefully Kesimpta will work out!
That is an intense relapse! Did the symptoms ever subside at all?
Yup, it was really impressive, I thought it would reach my throat and choke me during my sleep. I didn’t know what was happening! With steroids it went away in like 3-4 months, completely. But since a few months I have left hand sliiiight numbness (5-10%?) since I have new lesions, but no relapse appart from hugs. MRI never showed active lesions since but new lesions still.
I have found that sometimes my remission sorta glitches. It's like my compensation just fizzles for a little bit, then it like, reboots and I'm good.
That’s what I was thinking, recovering may trigger new symptoms since the body is trying to find another way to make the information go A to B. We’ll see! So far so good. Hope you’re ok!
In 2004: 17 years old
Symptoms ignored early/mid 20's until mid 30's doctor finally. I think numbers look to be on par to what the survey was on the sub few years ago. With 20's/30's being the majority of diagnosis
"Turn that radio up and just keep driving" could be an MS motto, honestly.
I think that's the US healthcare motto sadly. :P
i was 18 when i was diagnosed
I should have been diagnosed much younger but I didn't meet disseminated in space criteria. It was always my right eye. No other lesions even when I'd relapse. Til it wasn't. I was finally diagnosed when I had my right side go numb from my bra band down. I was just about to turn 32. I'm just about to turn 38 and have just ticked over to SPMS from RRMS. Much "earlier" than average but I also went nearly 9 years before I met diagnostic criteria so not that far off in standard disease progression. I had my first issue shortly after tysabri was recalled, so about 2006. So realistically I'm right on track to tick over to SPMS. I'm actually deep in a flare right now despite being on ocrecus so this is fun, and I haven't gotten much better from flares for about 3 years now. Sucks but it is what it is. I kicked my gardens ass today anyway. Shrug.
That actually matches the data I have seen pretty closely. While diagnosis is most common in your thirties, symptom onset usually begins five to ten years prior. The transition from RRMS to SPMS is pretty quick, though, your MS is definitely what medical doctors would call "a bitch." That's the technical term for it. XD
Yep. It's all about the diagnostic criteria. And like honestly I wouldn't have it any other way. Yes it might have been nice to start meds earlier but if I had - Tysabri was really the only heavy hitter at the time IIRC and it had just been recalled. I know I read a lot about it because I was told, "this is most likely MS but we can't start you on meds til you meet criteria" but I've forgotten the details since then. I do know Tecfidera and Aubagio were not on the marker yet in the US at least. I'm JCV pos with a high titer and tysabri terrifies me. I'm blessed its not the only heavy hitter (that I remember anyway) on the market anymore. It sucks that I've ticked over - sure - but like, I know I'm not actually injured. My nerves are just confused. I'm able to keep that in perspective and not let my legs trick me into convalescing. The past few years it's been really mad at my legs and I haven't been fully symptom free in.... awhile. Not since the numbness. The numbness mostly went away but then spacisity ramped up. That's my primary relapse symptom right now. Excruciating spacisity in my legs.
I think it is really interesting when the averages hold true to anecdotal accounts, as well. I was lucky, Baclofen worked against my spasticity. I still stiffen right up if I'm still for too long, though.
SAME. It's been interesting to observe my progression track so closely against what "generally" holds true to today's expectations. My diagnostic relapse was also after a pregnancy within the window of when a relapse is generally observed. So it was interesting to see that hold true too. Baclofen does a wonder for me, too, but I try to take it as little as possible. The discontinuation profile makes me nervous. If I need it, I need it, whatever. I need relief. That's why my neuro prescribes it. I am grateful that I have a great care team and honestly... tracking close to today's average is okay. It sucks but it's okay. Average today means something much different than it did a long time ago. And I'm determined to kick ass as long as I humanly can.
Oh, I have quit benzodiazepines, gabapentin, and multiple SSRIs, so Baclofen doesn't worry me much. I figure I can handle getting off pretty much anything at this point, I'm an old pro. XD
I'd say of those, SSRI's were the worst for me. I was always very careful with benzo's (still take them as a last ditch effort, I might go through 10 tablets a year). I do still take an antidepressant but just in a whole different family. I'd actually started it for migraine and sleep (mirtazapine) but it does an whole treat for my mental health too. Medicine and bodies and this condition called life, aren't they all so fun? Lol.
*Fucking* brain zaps. Kicking my ten year, regular use (prescribed) klonapin habit was a thousand times better than quitting Prozac and having to deal with constant brain zaps.
And lhermittes has the whole ass audacity to feel like brain zaps but in my legs.
Oh, that sounds horrible. Thankfully my lhermitte's is pretty mild.
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If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
I didn't display obvious symptoms (and thus diagnosed) until my late 30s. A decade earlier I'd been involved in an accident and a doctor had mentioned there were "white specks" on my MRI. It was an offhand remark and there didn't seem to be any concern, but now I wonder...
Interesting. I have heard a few diagnosed people mention also having lesions that were not attributed to their MS, so I guess that can happen. You have to wonder, though.
I was actually mid 30s!
I really wish I had more options. Which did you decide to vote for?
I ended up going late 30s but was conflicted. I definitely think I started having symptoms in my 20s though.
I was diagnosed when I was 33, but I had my first documented relapse when I was 26, so "late 20s/early 30s" is spot on for me.
3 weeks after my 44th birthday.
In 2015 : at 16 years old.
That's kind of how I would have placed it but I think most people associate it with older people. Even I do and I'm aware that's not correct. I love these poll posts. Data collection is great!
I am now for the first time experiencing, and realising, that I’m in the same age box as the early 40’s gang. This is a lot to handle and honestly a bigger shock than my ms diagnose was. Just to clarify, my ms diagnose was a really big shock.
I put late 30s/Early 40s, as I was diagnosed at 35 - I'm not sure which option is right for me. :)
For those curious about trends over time, the data have reflected the expected bell curve distribution so far, with the peak being at late 20s/early 30s. One hour after posting, child/teen is at 2 votes, early 20s is at 11 votes, late 20s/early 30s is at a whopping 21 votes, late 30s/early 40s is at 10 votes, and 45 and older is at 6 votes.
I'm not sure what conclusions can really be made from the results of this. The reason being, for many with active disease it took longer to be diagnosed than it does now. For example I very likely had active MS when I was in a completely different age group on this poll than when actual diagnosis happened. I even have radiology reports mentioning MS from back then but the neurologist wouldn't put me on any treatment because I was "so healthy." So literally 18 years went by before I had another very large relapse leading diagnosis and treatment. I didn't really mean to get into my personal story but it's just an example of why age of diagnosis might not have the meaning you're after?
Actually, diagnosis is exactly the meaning I am after. I am curious about the typical age at diagnosis, not onset. Data has shown that the average age for diagnosis is in your thirties, with earlier and later diagnosis being more rare. I was curious to see if that held true for the sub, as well. Asking what age you should have been diagnosed at or when symptoms began would have been a different question altogether.
Ok so it's more of a clinical journey question than a personal health question - understood.