I’m hoping you lovely people can help me make some/more/any sense of this.
Right, I’m currently in the middle of trying to get my ESA reinstated, just got the “we’re not changing our decision” reply to my MR…anyway. Went to the GP to ask to be referred to a neuropsychologist for another cognitive assessment as my previous one was 2 years ago and doesn’t count for the appeal, apparently, and while I was there my mum (who acts as my external hard drive as I find it impossible to be able to retrieve what I need to say to people in face to face situations) said about how I’ve never received any documentation from the neurologist after seeing him (the CAB lady said I should get a letter after every visit).
So…he printed some off for me, and now I get to the point of this! This letter from August is about the MRI I had in the summer last year. It says,
My last relapse was in March that year, and I had the delicious Medrone for that, so I’m confused by how an MRI in - I’m pretty sure it was July - would show active lesions? I think I just don’t know enough. I thought relapse = new and active lesions, is that not the only time? Is it like a stealth relapse? I’m really confused…
ESA is awarded for actual disability not number or extent of lesions. Symptoms have to be long term, over six months I think. A relapse won’t work unless it causes long term disability.
Oh no, that’s not what I’m asking, the ESA stuff’s just back story really, sorry for confusing things.
What I’m asking is why my MRI showed new and active lesions in July when my last relapse had been in March. Do new lesions not necessarily mean a relapse, can they happen without one?
Obviously there’d be new lesions since the previous MRI because I’d had at least 2 relapses since that one, but it’s the “active” bit that’s confusing me as it was months since my last relapse.
You can have a relapse without having new MRI activity and vice versa. For example you could have lesions on a part of your brain that doesn’t affect anything you notice so you wouldn’t have a relapse as such although obviously something is going on. I’m less sure on this point but I think you can have nerve damage to places away from the brain causing a relapse that wouldn’t show on MRI. Nothing straightforward with this life!
Hmm, interesting…after thinking about it yesterday I did wonder about the lesions affecting something I’d not immediately notice. That’s pretty unnerving to be honest, insidious stuff…
MRIs are useful as a prognostic tool; ie. part of the McDonald assessment criteria.
It can also indicate an activity level; especially before, during and after a course of DMDs.
For us sufferers however, it means little as far as ‘day to day’ is concerned.
You can have symptoms but no lesions; you can have lesions with no symptoms.
Despite the wealth of insight and knowledge afforded by technology, they are meaningfully little more than pretty pictures. And so for MS’ers, the uncertain future continues to weigh heavily. (But this is true for anyone, sick or healthy…)
A question I’d be asking is why I was not told 8 months ago that the MRI showed significant activity, and given the results what is to be done about it?
If you are not on a DMT you ideally need to explore starting one. If you are on a DMT you need to be asking about looking at escalating treatment. New and active lesions evidences your MS is or at least was active at the time. The treatment paradigm should be to deactivate MS as much as possible. You need to know what going on with your health to make informed decisions.
Honestly, I don’t mean to rant and its certainly not directed at you, however I come on here, and time and time again read posts where people don’t appear to be kept informed about their health. I fully appreciate I don’t know any of the facts and all cases are different but I urge people to make sure they stay informed and be kept in the loop about their health.
In respect of sub clinical activity it is well accepted relapses are just the tip of the iceberg which further highlights the importance of regular MRI’s in RRMS.
It’s taking me a while to process this to be honest. The thought that damage goes on “behind the scenes” as it were.
Pob’s comment here:
“For example you could have lesions on a part of your brain that doesn’t affect anything you notice so you wouldn’t have a relapse as such although obviously something is going on”.
That’s kind of like that - if a tree falls in the woods and no-one hears it, did it make a sound - thing, isn’t it?
It’s surely would still be a relapse, it just didn’t impact on anything physically or mentally noticeable, right? But damage has still been done. Or do I still have this wrapped around my neck.
Humbug my last MRI was last summer, the one before that was after a relapse last January.
So - January relapse > MRI soon after > March relapse (which I didn’t see anyone about as I had the Medrone that he’d given me in January but I’d not taken > scheduled (I think) MRI in July
I’ve never actually been told anything about any of my scan results. I only have this letter because a GP at the local surgery printed some off for me. My neuro doesn’t seem to be one for sharing!
I am on a DMD, I was on Tysabri initially but was taken off it in January as that was the 2nd relapse in within 5 months whilst being on that. I started on Tecfidera in June.
You’ve got me worrying a bit now. I feel I should have had another MRI by now to see if the Tec’s managing to quell things or not. I thought you were meant to have one every 6 months, I’m SURE the nurse who did my Tysabri infusions said that.
Your MS sounds highly active. Tysabri is up there with lemtrada and statically more effective than Tecfidera.
Have you relapsed on Tecfidera? I would expect a repeat MRI within 12 months, sooner if you’ve relapsed. Bear in mind though it can take a little while for drugs to get into your system. If your next MRI shows progression, I would be exploring the next most effective DMT, Lemtrada. If its stable on Tec that’s great news and no need to escalated.
You want to be aiming for NEDA - no evidence of disease activity.
Your neuro really should be sharing the results of your MRI’s with you and in a timely manner, unless you don’t want to know, not everyone does. You can insist on being copied into all letters. Given you have difficulty retaining verbal info this would be helpful for that reason too imagine.
Mine is highly active, yeah, I think it’s why I was put on Tysabri as a first treatment? Somewhat unfunny irony that the January relapse was the day after my Tysabri infusion!
The intent then had been to give me Lemtrada. Well, they gave me a choice of that or Tecfidera, they have to don’t they. But I heard the MS nurse ask the neuro what one he wanted me on and he said, “the strong one”, so he wanted me on Lemtrada. But because they’d never given it to anyone before it took a long time to get things sorted out.
The MS nurse wanted me on Tecfidera in the interim, but the neuro wasn’t happy with the idea of switching me about between DMDs like that, so he said I’ll stay on the Tecfidera until it shows to be not working for me either. Which it is so far, to answer your question, no I haven’t relapsed whilst on it. Very little in the way of recovery, but that’s a different matter, isn’t it.
I know it can take a while for a treatment to take effect, I started on the Tec. in June last year, so the MRI in July would be a bit early to show if it was doing its job, wouldn’t it. Hopefully the next MRI will show no new activity. I will ask to be copied into all letters, as you say, it really would help considering the problems I have retaining info of any kind!
I’ve seen my neurologist today and I asked him about what he’d said in the letter last year; about new and active lesions in July, when my last relapse had been in the March. He said that you can have maybe 10 periods of activity that create new lesions, but only one relapse. It’s that insidious thing again!
I’ve asked him to copy me into all letters now, hopefully that will get done.
I told him about the phantom heat that I’m experiencing now, and the leg spasms, the increase in fatigue and greater struggles with focus, he’s booked me in for another MRI so he can see what’s going on. I’m not sure it is a relapse, I want to think it isn’t, it’s just that with a cluster of symptoms coming along together I can’t help but worry. So I’m glad me’s getting a scan done.
He offered the steroids but was fine about me not feeling I needed them, I was glad about that too, don’t want any more of those unless I can’t possibly avoid them!
I asked him about B12 for the fatigue, he says you don’t need it if your levels are high enough, so he’s getting me to get mine checked (Vit D too) when I get my 3 monthly Tec. bloods done at the end of the month. Seems he’s not convinced about the efficacy of taken B12, he says the French push for it but PFFT, they’re French…first time he’s ever said anything like that, made me laugh!
Also…he’s writing a letter for me to include with my ESA appeal. Says he’ll make it dramatic because he knows how this stuff works, ha!
Feeling calm and happy after this visit! That’ll last till Monday - got to go into the Job Centre EVERY DAY for the next two weeks…that’s going to be extremely physically draining for me. At least it’s a day short each week thanks to Easter!
Yes! I did Way more than usual, because I made a point of writing down all the things I wanted to talk to him about! Plus I took my Mum with me to remember the things I forgot.
Though I did still forget to mention the vertigo episode back in January, but that’s not happened again since (thankfully!).
Way more than usual, because I made a point of writing down all the things I wanted to talk to him about! Plus I took my Mum with me to remember the things I forgot.