gates1989 18/01/18
Last reply 2 months ago
Active lesion 1 year after lemtrada

So, i had an mri after Xmas. Yesterday I went to see my nurse for my monthly bloods. I asked her if she’d seen my latest mri and she said yes, when I asked her if it was ok she said I had an active lesion. What does this even mean? I haven’t had a relapse, and I’m due to see my neuro tomorrow but I feel really disappointed. I really wanted to have NEDA after R1 lol. It’s all Want want want with me lol 😂

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mamalou70
3 months ago

If you have an active lesion then it means that things are going on . Not everyone knows they are having a relapse but in theory that’s what it means . Are you due to have round 2 of lemtrada ?


stumbler
3 months ago

@gates1989 , I have to assume that your latest MRI scan was performed with contrast as well. And, how long after R1 was the scan taken?

Unfortunately, not everyone is “cleared” of MS after R1, hence the scheduled R2 a year later.

So, remain optimistic that you will achieve NEDA

PS Nice picture you’ve posted of you as your avatar. 😉


gates1989
3 months ago

Hi @mamalou70 – I guess I assumed if I was relapsing I’d atleast feel a symptom! 10 years down the line and I’m still learning lol!
Hi @stumbler – yes I had contrast and I had the scan 11 months after R1 – I know what you mean and I totally understand R2 is necessary but I just wanted that good news to give me the kick up the ass to be mentally ready for R2! Haha thanks, thought it was time for an update lol


joanne46
3 months ago

Hi
I had my first round of lemtrada in November, next round due this November…and it’s all very new to me…so please update us after you have spoken to your Neuro if you can as it’s all great info for us lemtrada newbies…
Hopefully the fact that you are feeling relapse free with no new symptoms may just mean that it’s a very minor setback on the MRI…..
When did you have your lemtrada treatment? X


gates1989
3 months ago

Hi @joanne46 I will update you tomorrow, I guess I just want to know what this means really! I had my R1 in jan 17 and my 2nd round is on Monday xx


tracyd
3 months ago

@gates1989
Don’t lose heart, the treatment is in 2 parts specifically for this reason, it’s common to have activity during the first year, unless it’s massively aggressive it’s not a bad indicator.
Round 2 is the kicker, it’s telling your immune system to behave itself once again (because often our immune systems are dumb and need to be told twice)
On Monday you get to kick it in the nuts again to remind it who is in charge xx

If you need to talk drop me a PM, happy to share contact details xx


gates1989
3 months ago

Thank you @tracyd xx it’s just a bit gutting I suppose! As far as I knew I hadn’t had a relapse x


tracyd
3 months ago

@gates1989

A lesion doesn’t necessarily mean you have a physical relapse immediately or experience new fun symptoms. Thats sort of the cumlination of activity when it finally munches it’s way through something important and your body notices – bang relapse – if you’ve not felt these then that’s good news xxx


tomlev
3 months ago

Gates1989 thank you for posting this, I am in the same boat as you, 8 months past R1 & still seeing significant deterioration, your replies sound true, R2 is there for a reason! ‘Keep strong & smiling, we’ll give MS a run for its money’ 😊


hassy11
2 months ago

Is this topic still ongoing?


cheryl118
2 months ago

Hi.
I don’t want to sound negative, but I had my second round of Lemtrada nine months ago and my symptoms continue to worsen. My walking is deteriorating so bad. I had an MRI about 6 months after dose 1 and that showed no change. No additional MRIs since, but my symptoms keep getting worse and worse. Has anyone experienced this? I would love to hear from people who have been treated with Lemtrada and let me know the time frame that they started to feel a difference with their symptoms post-treatment. I know that everyone is different and I am a realist, but I was at least hoping to halt or slow progression.
I am so discouraged and depressed. My neurologist said that maybe we could start thinking about Ocrevus. Thanks for any thoughts.


noelie
2 months ago

@cheryl118 yes 3 months post R2 and i had similar, my walking was deteriorating, however, not all is due to nerve damage, but also to muscle weakness. And we can do something about that: exercise but specific exercises to target the weakness, have you seen a physio? I’m going to the gym 4 to 5 times a week, and my walking is getting better. Happy to talk x


stumbler
2 months ago

@cheryl118 , is the Hydrocephalus situation now well and truly in the past?

And, have you had a further MRI since the post-round one scan?


cheryl118
2 months ago

@noelie and @stumbler, Thank you for responding to my posts. I appreciate the support.
Yes, I have had lots of physical therapy. I still do most of the exercises at home and I go to the gym regularly, but I get so frustrated because as time goes on, I am able to do less and less of the exercises that I am used to doing.
I’ve only had one MRI since I started the Lemtrada, and that is where they first discovered the hydrocephalus. I have had my shunt adjusted several times and I have had many CT scans of my brain and the hydrocephalus is resolved/stable. They tell me that my symptoms now are related to MS and not hydrocephalus.


noelie
2 months ago

@cheryl118 sorry you’re struggling with this, not sure if that helps but while i’ve had invaluable advice from physio and the exercises given to me were relevant, I just found that they weren’t enough on their own.

Everything was getting more difficult to the point I was forced to ask for sick leave. I am now using the MS Gym channel on YouTube, and advice from my pilates teacher and the combination of all 3 resources is brilliant, the MS gym shows massages and stretches to do before the exercises, and this has helped me no end. I have also just started using electric stimulation for some muscles that are too difficult to work on (foot drop). I had a few bad days during the week and panicked, but today was better again. I still have a long way to go, currently working on my leg, next I will have a word with my shoulder.

I get your frustration after Lemtrada, I hope you get better soon. x


cheryl118
2 months ago

@noelie Thank you so much for the tips!! I have already been watching the MS Gym videos on YouTube. I really hope that this helps, because he is describing exactly what I am experiencing. I hope you get better soon, also.


noelie
2 months ago

@cheryl118 glad it gives you some new avenues to explore. I am quite new to this as well and like the way he explains how things work (or don’t!). Fingers crossed. Have a great weekend. xx

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