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newly diagnosed - how old are brain lesions

Hi newly diagnosed. Apart from sheer shock/terror I am going over things. I had two lesions in april and on further mri in August got two more. How old would the first ones be and am I now continually going to develop more as fast as this. Git positive l.p. had on in March.

Bumping this up to page one. Can anyone help Rosie out?

Hi Rosie , this is a question ive been trying to find the answer to myself, so I will be interested to hear the replies. Was your second MRI with contrast? I have read that old lesions can take ages to show on MRI, which is why possibly so many people have clear initial scan results. Of course if your second scan wasnt with contrast, then that cant be the case! As far as your second question goes, I really wouldnt worry about the amount of lesions you have, Its where they are that is important, and because you are diagnosed you wouldnt normally have new mri scans now anyway. Take care.

Hi thanks for replying. I didn’t go into detail with neuro 're: mri. I’m waiting to go to me clinic to see if they’ll start me on treatment. Taking each day in a positive way!

Hi Rosie,

They can only tell (by using MRI with contrast) whether lesions are currently active or not. Beyond that, they cannot tell how long they have been there - unless there is a previous MRI to compare with - in which case, as with your latest MRI, they can definitely say they’ve materialised since then.

Unsurprisingly, most people are diagnosed when their MS is, or has recently been, active (Why would they be at the doctor’s in the first place, unless something had happened to cause symptoms?)

That means you would expect diagnosis to occur during a “lesion forming” period.

Four lesions in total is not actually very many. I had six brain lesions at first MRI plus one (maybe two) in my spinal cord. I was told that was: “not too bad”, as it was not uncommon to find literally dozens.

Six months later, I had a: “a few more” - they never did tell me how many, and I never did ask, as I suspect I wouldn’t have liked it. I was told this too was “OK” - not alarming - although it was enough to get me a confirmed diagnosis.

Although I was eligible for DMDs, I made the decision to decline them - with my neuro’s backing. I’m not trying to influence your treatment decision, which is between you and your neuro. Only to make the point he did not feel six lesions, plus “a few more” - was a desperate case, requiring immediate, aggressive intervention. It’s not at the extreme end of the spectrum.

I don’t doubt I must have more lesions by now (three years), as it’s a normal feature of the disease that there would be more over time. However, number of lesions by itself is not strongly correlated with the severity of disability, so I’m relieved I’m not being constantly scanned to check for new ones. The best indicator of how I’m doing is how I feel, and if I’m getting on alright, there’s no need to keep counting lesions. So please don’t get too hung up on the numbers game. Lesions are an expected part of MS - if you didn’t have any, it wouldn’t be MS. So a non-zero figure doesn’t spell catastrophe. I know it’s not normal to have lesions at all, but its completely normal for MS!

Hope this helps,

Tina

x

Hi Rosie,

they can’t tell that from any of the tests. It’s why my diagnosis is only ‘likely MS’ because they have to prove dissemination over time (which, I guess, in your case is given). My report from the neurologist says that I have a lot of lesions (which indicates more than one episode), but only in the right side of the brain (apparently it’s unusual to have seral episodes, but lesions only in one part of the brain). But I was also told (by my physio) that it’s quite common that the first episode goes unnoticed.

I think as far as how quickly new ones can develop, only time will tell. Hopefully, they can put you on drugs that can slow it down, so that you’ll only have episodes every few years (that seems to be the goal of most MS drugs these days). I think it’s also quite common for relapsing-remitting MS to have shorter intervals between episodes in the beginning and longer intervals later on. But MS is unbelievably unpredictable, so I don’t think there are any hard-and-fast rules on this.

I hope this helps.

Best,

MJ

[quote=“rosie13”]

Hi newly diagnosed. Apart from sheer shock/terror I am going over things. I had two lesions in april and on further mri in August got two more. How old would the first ones be and am I now continually going to develop more as fast as this. Git positive l.p. had on in March.

[/quote] Hi Rosie. I was diagnosed august this year. I was told I have multiple brain lesions and one long lesion in my spine. I’ve got no idea how old they are or what type of ms yet. I’m trying really hard just to take each day as it comes. It is scary but what can you do…its helped me a lot coming on here and sharing my feelings with people going through similar experiences. I’m no expert on brain lesions but its possible you may just stop at 4 lesions…were all different. Put this down as one of your questions to ask, next time you see the neuro. You can also read up on the subject…depends how much you like to know. All the best to you on your journey,

Thanks everyone for your answers. No doubt I will have quite a few questions for neurologist when I see her next. since this is all new to me i have a tonne of questions running through my brain! Keeping a diary now not everyday but just when I feel something out of the norm is going on. Cheers x