How many new lesions?

Everyday living
1

Well, after 4 years I got to see my ms nurse today. It was about this time of year in 2021 during those long ago COVID years! Who remembers them? ME. So when I was diagnosed twenty odd years ago there wasn’t many DMD’s around and it’s not something I’ve ever been offered. In my ignorance I only knew two people who had ms and they were both in a wheelchair. And the only thing that I remember clearly from the moment my consultant in those days told me that I did have ms was, well, I’m not going to end up in a wheelchair. I was determined to keep walking as far and as long as possible. To be fair my walking has never been a big problem with my ms. Don’t get me wrong, I have had periods when I have had trouble walking. Two occasions in particular spring to mind. My issues tend to be others, ie, vision, numbness, bowel problems that no one really wants to talk about, vertigo, swallowing and although my speech is not specifically affected I do have trouble remembering the word I’m looking for, on more and more occasions. So I do consider myself fortunate, lucky if you like. Back too today’s appointment and she thinks it might be worth considering having some kind of DMD treatment now. I did ask if I’m now too old to be considered for that.. I’m 64. She said not necessarily so. I was diagnosed with RRMS and as far as I know that is still the case as nobody has ever told me differently. Although I believe.. correctly or not, I’m not sure.. but I think that they used to put you into the SPMS when you have had ms for a significant period of time. Does that still happen? At the moment my problem is trying to find out how many new lesions I had at my last scan; that was done in the summer and I only got the results two weeks ago.. well, part results as I don’t know the number.

After my appointment with my gp regarding the results I tried calling my consultant. As you’ll all be aware it’s the constants secretary you speak too. As usual it was a voicemail I had to leave. They did actually call back later that afternoon. Unfortunately it wasn’t the constant or even the consultants secretary.. Oh no..it was just random individual! No help whatsoever. She just kept repeating that I should ask my consultant! Hello.. that’s what I endeavoured this morning. Eventually she got what I was attempting to find out and said that she would ask my consultant to call me or write to me. It’s less than two weeks so, early days, maybe. My ms nurse is also going to write to her now, as well after I spoke with her, this morning.

Anyway, sorry it’s a little bit long winded. But I couldn’t condense it any smaller!

2

As far as I understand it, it’s a matter of clinical judgement of how your particular MS is behaving that drives whether you’re classified RRMS, SPMS or something else. When I was dx 25+ years ago, the word was that most are SPMS 20 years later but here I am still RRMS, fingers crossed. They say that one of the things that might have pushed the SPMS can down the road more generally is DMDs but that isn’t the case for you, is it? Might have helped me though. Good luck with starting on a DMD, if you do. Better late than never.

1 Like
3

Yes, thanks @alison100 and you’re correct, having never taken DMD’s that’s not the case for me. The ms nurse did mention when I queried whether that they would prescribe a DMD that my age wasn’t necessarily a bar, but it depends on their current criteria for being offered one. Apparently they do occasionally change the criteria at times.. not by much just small changes. I’ll have to see if they do offer me one before I decide if it’s for me. Two other people I’ve met recently have been told they’re not eligible and they both go to the same hospital as myself. Similar ages too as they’re both in their mid sixties. So, I’m not banking on being offered anything at the moment. I might have already missed that boat. But, today was the first time it’s even been mentioned by anyone I have seen. I mean the ms nurse thought it might be suitable for me. Just a pity she can’t prescribe it! Hopefully she’ll write a good letter to my consultant. Fingers crossed.

1 Like
4

Really frustrating trying to communicate with hospital consultants… if you don’t get any joy, I wonder if it’s worth writing a letter, addressed to the neurologist in question, and posting it. Surely an actual letter to your neurologist has to be passed to that person?!

My understanding is that to be diagnosed with progressive MS you have to have had steady progression in symptoms for a year, or something like that. So it’s not determined by age/length of MS per se.

On the age/DMT thing, if you look around online I think there are a few research studies that have been conducted.

The issue seems to be: if your immune system gets weaker as you age, does that mean that it won’t “attack” your brain in the same way? And does that in turn mean that DMTs won’t help to protect you from these attacks?

And if your immune system is getting weaker anyway, would it be wrong to prescribe a DMT that weakens it further?

But then, the question is, what counts as “old” here? 90+? 40?! Nobody has ever told me clearly just when our immune system changes. Or how much that varies from one individual to the next.

There have certainly been studies on withdrawing DMTs in people already taking them, who are stable, over a certain age. The results I saw suggested this was NOT a good idea: that the people did worse as a result. You might do a bit of research on this.

Personally, I think it’s a good thing they mention DMTs to you. Too many people with MS seem to have been sidelined in the past - missed the boat, too old, we like treating 22 year olds with no comorbities… with “old” often being actually not that old at all. If you are getting MS symptoms and they might be driven by new inflammation, why not go on a DMT to deal with that? There are also a huge range of DMTs now, so it’s not just whether, but which. A DMT might stop further relapses and disability accumulation, helping you to keep walking…

On eligibility, there are official guidelines, but my impression is that it can be very much down to the individual neurologist’s view. The guidelines don’t cover every eventuality.

2 Likes
5

Thanks for that @Leonora Yes, it has crossed my mind to write a letter to my consultant but, I think that it’ll be like when you call them; you don’t get to speak with them but, just the secretary.. and I think that it’ll be the same with a letter. I’m sure that the secretary would open their mail to see what’s important..or what they deem to be important. To be fair I have been a little disillusioned by my consultant for several years now. I’m actually going to see my GP again this Friday to see if she’ll be able to do more to help with finding out exactly how many new lesions there actually was and just as important, how old they are, too. I believe that the newer they are then the brighter they are too. Maybe others here might have some knowledge of that.

Getting onto age. I’ve met two other people with ms recently and they’re both a similar age to myself..mid sixties. And they go to the same hospital as me in West Norfolk. Both been diagnosed like myself for twenty years and more. And both have been told that they’re too old for DMD’s! Different consultant than I see, but, maybe it’s hospital policy there not to issue DMD’s to people they deem to be too old! And maybe sixties is too old for them.

My ms nurse did think that they might offer me a DMD for the simple reason that I have had a few issues this past year or so. Not mobility issues. My issues are generally other things. And this year in particular, blurriness, vertigo, numbness and pins & needles also bowel problems too and this ongoing tightness in the top of my legs..buttocks really making it uncomfortable to sit. But, knowing what these other people have told me, I’m not so sure. But, be sure to know that I’ll let you know if and when I have been.

Oh one thing that she did mention yesterday was it might not be a relapse but something else, ie it’s now moved on to SPMS. In which case there’s less choice of a DMD, than if I still have RRMS

6

You may be right about the letter, but I’d have thought consultants at least have to see such correspondence. I wrote a letter to a consultant (non-neurology) during covid and got a rather long letter back… And I do think a decision like starting/not starting a DMT, or having/not having SPMS, would need to involve a neurologist.

Having said that, if your consultant is not so great anyway, why not ask your GP to refer you elsewhere? That’s if you’d be willing to travel.

7

Yes @Leonora I’m sure that you’re right about them seeing any letters written to them. And also about any DMD treatment too. I probably haven’t explained it very well but, my ms nurse is going to write to my consultant asking her if she might consider myself for a DMD. I know that a ms nurse isn’t going to be able to prescribe that for me. That’ll have to be a dr. As for asking my GP to refer me to another consultant that’s something I actually asked in another post a while ago now but, it is something that I’m going to raise with my GP on Friday. And I will ask as diplomatically as it is possible to be.

When I have had empathetic dr’s it’s a whole lot easier to talk with them. Same with consultants too. Trouble is my last GP retired and he was a very nice man. This one is ok but I do wonder if she wants to treat the “whole me” and not just pick and choose certain elements of me! Because the jury is definitely out on that one.

8

Sounds like a lot to process Freshairman.

Just a thought, but have you checked your NHS app for any MRI results? Hospital data is pretty hit and miss on the app, depending on area, eg in my area I can see hospital appointment letters and occasionally a consultant letter on the app, and not MRI results (unless they have been sent to my GP, in which case it is part of my GP record) but it might be worth a check.

It sounds like you don’t have loads of confidence in your neurologist. There is a specialist MS neurology team at Addenbrookes in Cambridge - I don’t know if that’s possible to travel to from Norfolk for you and possibly get referred there? Sorry, my geography is a bit rubbish!

Wishing you well

Alison

1 Like
9

PS I really sympathise with the difficulty in getting through to a consultant! The consultant secretaries for my trust have been helpful but it’s still hard to get through to them, and I don’t always know if they’ve done something. I hope you are able to get some help

10

Yes, hi @lnp8acr that’s kind of what I’m hoping for..at least that’s what’s in the back of my mind, anyway. I actually go to Addenbrookes regularly enough, so attending there for my ms is not an issue. (Have cancer so that’s where my treatment has happened) I can see occasional things on there but, not everything that’s for sure and I’m also sure that some things have disappeared for whatever reason too. Or maybe I just can’t find it again when I’ve already looked at it once! I don’t find it the best thing to navigate but, I’m not a technology person. Getting back to the appointments. They put them on there and yet.. they still seem to send me an appointment letter in the post to be delivered courtesy of Royal Mail! Think of all those trees! And not forgetting the postage for the money short NHS!

But, yes I think that I am going to ask my GP if she will refer me to the ms neurologists at Addenbrookes. My very first neurologist was based there although I saw him mainly at the Queen Elizabeth hospital in King’s Lynn. He was without doubt the best I have ever seen. Pity he retired!

11

Hi Freshairman,

Sounds like you have an idea of what you want - a referral to Addenbrookes. I think it helps to have a clear idea.

I’m sorry to hear you are dealing with cancer too. I hope your treatment is successful.

With best wishes

Alison

1 Like
12

Yes, thanks Alison. Like all of us..it is what it is. And I will ask her tomorrow if she can refer me to Addenbrookes.

1 Like
13

Hi there,

People have said lots of helpful things on here, but I just wondered about something that has not been mentioned. Rather than a matter of age, if at some stage you have had a cancer diagnosis (whether active or totally inactive now), that may have a bearing on what they might offer in terms of treatments. I had been approved for Ocrevus, but the oncologist said it was not appropriate.
Wishing you all the strength to have an appointment and work through “the system”.

1 Like
14

You might well have a point there @anjipierce I read another post somewhere on the forum recently and they mentioned about themselves having cancer as well as the ms and having to get both consultants involved and especially the oncologist because the drugs don’t necessarily work together. I’m currently in remission now having the last of my chemotherapy drugs last year. So, hopefully that won’t be an issue now. I do have a blood test booked for two weeks time to see if my cancer may have returned. Hopefully not. But, I never know until they have the blood results.

1 Like
15

I managed to persuade my GP to refer me to the ms neurologists at Addenbrookes this afternoon @lnp8acr Actually it wasn’t my own GP but another one of the GP’s at my surgery. Probably be a little while before I see anyone but at least he said that he would write a referral letter for me. Oh and I received a letter from my ms nurse today, too. It’s regarding the appointment I had with her on Tuesday. She’s actually written to the neurologist who I last saw back in February. Anyway, she’s asked her to speak with me regarding the MRI scan that showed multiple new lesions when I had it done back in early July. Because it would really be nice to know, not just how many there was, but also how old, or new that they are, too. Mind you she might not speak with me now I’ve asked to be referred elsewhere!

16

Hi Freshairman,

I’m glad you got the referral that you wanted, that’s great news :slight_smile: I think they have pretty good processes in place at Addenbrookes for connecting you with an MS nurse etc, so hopefully it will all go smoothly and you will see a more helpful neurologist.

I’m sorry the MRI results weren’t available to you before and that you don’t have any more specific information. Perhaps when you see the new neurologist they might be able to share more detail with you if you ask.

Good on you for getting the referral :slight_smile:

1 Like
17

Yes, thanks Alison. Actually he didn’t take much persuasion at all. He just said that he would refer me to Addenbrookes when I asked him.

It is about us as individuals and we’re the one with the ms..or maybe other issues but, some dr’s are more willing to share stuff with you than others. Really, we ought to be told or shown whatever it is that’s wrong with us. It concerns nobody else except us and perhaps the people treating or caring for us.

18

I think you’re right. Information is power and all that!

19

Just to say that at an age of 72 next summer and 19 years since diagnosis I’m still receiving the DMT Avonex. In terms of the number of lesions all I know is that when diagnosed I was told I have ‘quite a few’ . I’ve never asked how many and to be honest don’t really want to know or see images of my MRI scans (might scare me!)

20

I can only say how fortunate you were to be offered DMD’s @Hank_Dogs it was something I never was. Speaking with my ms nurse this week she said that it might not be a relapse but, my ms is now progressing. Without being told if the lesions were old or new she said she can’t be sure. Hence the reason for her writing to the neurologist asking for clarification.

Oh, my first neurologist showed all his patients the scans, or so I was told by the ms nurse at the hospital. I can remember two lesions on mine. Both on my brain. Obviously I wouldn’t have known what I was looking at if he hadn’t pointed out what I was supposed to be looking at. I would like to see the current scan and hopefully be able to see that very first scan to see the comparison and how many there is now compared to my diagnosis scans. I know that there’s now multiple but, how many is multiple? I mean, is two multiple? And I had two at my first scan. So I’m presuming that there is now more than two. But, it’d be nice to know for sure. For me, anyway.