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RRMS or SPMS?

I know some relapses can leave a person with residual symptoms, but I’m wondering if the symptoms never disappearing could also be an indication that RRMS is developing into SPMS?

Since every persons experience of MS seems to be different and there are no hard and fast rules about it, how would that even be determined?

So far as I can tell, there are more questions than answers.

My understanding of a change from RR to SP is no more relapses with a gradual worsening of symptoms. Although I don’t understand how this can be determined if someone is on a DMT that is supposed to stop relapses.
As you say everyone’s experiences is different.
:dizzy: sorry just wanted to try an emoji
Janhhh

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Hello

Basically it’s not quite as clear cut as RR=remission, SP=no remission.

It sounds like it is because of the names the variants were given back in the Middle Ages (a good long time ago anyway - they were added to the general label ‘Multiple Sclerosis’ over time as the variables became noticed.

With RR, you expect to get complete or partial remission from a relapse. But there’s absolutely no time limit on remission. So often remission takes so very long and is so gradual it feels like the relapse symptoms are permanently and that you’ve moved on to SP

With secondary progressive, it generally is only identified as such in retrospect - probably measured in months at least, more likely a couple of years because of the variable nature of relapses. So many of us panic about progression from RR on a regular basis. It’s a good idea to put such fears out of your head if you can!

To add to the problems there are two separate issues to muddy the waters still further, one is that many people just never progress from RR. Being on an effective DMD is helpful for that. The second is that some people go from RR to progressive relapsing (or PR). Like me.

It was assumed by me and my neurologists (I had two, I was over supplied in a factory error I think) that I had moved from RR to SP. Then I had a relapse. One that conveniently began on the day of an MRI scan. So the scan showed up bright white inflammation, then I had partial remission with steroids. Other than a few other relapses, I am generally progressive - my disability worsens all the time.

And don’t get me started on CIS. How the *#@& do the neurologists know from the outset?

So, there you have the problem in a nutshell. We are better off considering that we either fall on the RR continuum or the PP (which has its own special problems) one. Worrying about where you are on that spectrum is pointless.

MS is an awkward cuss of a disease. I don’t think I shall pick that one next time.

Sue

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Thank you both for your replies. I’ve been reading up and it seems to be a bit of a minefield.

I supposed there’s no point in worrying about whether the MS is progressing or not, I’m not on DMD’s anyway. But if I found out in hindsight that what I was experiencing were more relapses or that it had progressed and they could have done something about it earlier (i.e. put me on DMD’s) but didn’t, I’d be bloody annoyed.

Last time I thought I was experiencing a relapse I spoke to the MS Nurse, who in her usual supercilious manner told me ‘that doesn’t sound like a relapse’. Only to receive a letter from the Neurologist a few weeks later, telling me in his opinion, that it was.

So now I don’t know whether to get in contact with them again or not, or just bury my head and hope I’m imagining it.

I have had RRMS for 20+ years and pretty much every one of my many relapses in the early years left permanent damage. I suspect that expert functional or scan examination would confirm that in fact absolutely every one of my relapses failed to heal totally. My MS was very aggressive from the start, admittedly, but I don’t think early failure-to-heal-completely is that unusual, although it obviously is a bad marker for prognosis, particularly if is is very marked. But in my past 10 years on Tysabri, all has been peace and quiet, thank heavens and fingers crossed. TBH I doubt whether, in truth, MS fits very comfortably into the tidy artificial silos we have invented for it - RRMS and SPMS etc. I suspect it’s all a good bit messier than that.
Alison

Yes, we made a bad menu selection, Sue, no question. I’ll choose a different option next time too. :slight_smile:

Basically EEG, if you have a diagnosis of relapsing remitting MS, you should be able to get a DMD. It’s part of the NICE rules on drug availability for RRMS. Have a look at Disease modifying drugs (DMDs) | MS Trust

It’s definitely a good plan to speak to your neurologist about DMDs. You may not be too keen on taking drugs, but believe me and Alison, without drugs, or with only low risk/benefit drugs, deterioration is possible, maybe even probable. I’ve failed on 4 DMDs (ie had bad side effects). I’m very disabled after 24 years with MS. Alison is stable on Tysabri even with having had lasting damage from relapses. Tysabri is a great drug. I was very disappointed that I couldn’t take it!

Best of luck

Sue

I started off with the diagnoses of RR MS, after 20 year of relapses then moving countries and Neuros I was asked to take part in an MRI study it was at this point I was told I now had SPMS.

Thanks @Ssssue for your reply. It might be part of the NICE rules on drug availability, but it seems the decision still rests very much in the hands of the Neurologist, and the last time we spoke, he said the Pro’s for taking a DMD were outweighed by the Con’s (side effects) in his opinion.

He said he’d ‘consider it if I were to have 2 further relapses’. Well I’ve had one mild one which I let him know about, so I have to wait and see if I have another within the specified time-frame. It seems quite a cruel and anxiety-provoking way to determine if someone should be entitled to go on DMD’s or not.

I sometimes wonder why they (Neurologist & MS Nurse) bothered to give me a dx of RRMS when all they do is play down and are dismissive of any potential symptoms I bring to their attention as a possible relapse. When I first received my dx, the only thing they were concerned about was that I inform the DVLA, and when I hadn’t at 2 subsequent appointments, were quite adamant that I was breaking the law by not doing so. (The DVLA & Insurance Co are now aware). When I reported the tingling & numbness in my left hand last year, the first thing the MS Nurse asked me was if it affected my driving! Yet no treatment was offered and I was told they would take a wait and see approach.

So I manage as best I can, but feel so alone.

Dear EEG

I read your post this morning and to be honest, I am horrified by your neurologists attitude to DMDs.

It is very rare for me to say such things, but I truly believe your neurologist is wrong.

So I started looking for evidence to back up my belief that once diagnosed with relapsing remitting MS you SHOULD be offered a disease modifying drug. This is what I found. All come from reputable and genuine U.K. sources of information. This does not count as random ‘googling’.

First: https://multiple-sclerosis-research.org/2021/04/early-treatment-is-important-to-limit-accumulation-of-disability/ This is from the Barts Blog which is an excellent source of reliable information.

Then: What happens after diagnosis? | MS Trust In particular, have a look at the section ‘Exploring treatment options’. There is a statement ‘The earlier you start treatment, generally the more effective it’s likely to be.’ The MS Trust make it clear that ‘ a few months delay is unlikely to be critical unless your MS is very active’ but they don’t suggest waiting for more relapses before starting disease modifying treatment.

Also: https://www.mssociety.org.uk/sites/default/files/2020-08/Just%20Diagnosed%20MSS.pdf
In this MSS publication, especially see page 22 -

Treatments: The benefits of starting treatment early
DMTs work better the earlier you start taking them. Damage caused by MS builds up over time. So the earlier you begin treatment, the more damage you can prevent.
How early is early treatment?
Doctors recommend treatment starts as soon as possible after you’re diagnosed. Within six weeks of being diagnosed you should have a follow-up appointment to talk about treatments.’

Then there’s: Disease modifying drugs (DMDs) | MS Trust
The Trust writers make it clear that it’s ‘generally accepted that the earlier you start, the better outcome & less disability.’

Thus, after reading all of these links, it is absolutely blindingly clear to me that the sooner you start taking a good DMD the better your future will be. There are people who are diagnosed after one MS episode and are given Lemtrada or another very effective drug. Clearly, we can’t compare ourselves to anyone else, our circumstances are always different to everyone else.

Your neurologist may be an expert on MS and very familiar with all the available drugs. He may be making an excellent clinical judgement based on your physical presentation, MRI and other test results and co-existing health issues. But if so, I don’t think he is making his decision particularly clear to you.

In your situation, I would write to him and give him the ‘benefit’ of my links demonstrating why a diagnosed person should be given the option of taking a DMD. You could decide for yourself that the possible side effects outweigh the benefits of a specific drug. It would be within the neurologists purlieu to decide which of the available drugs (MS Decisions aid | MS Trust ) you should be offered and on this subject both his opinion and the availability of facilities might be relevant.

In the light of suggesting you include some (maybe not all!) of the above links, it would be better to email. If you don’t have an email address to write to him (assuming you decide to - sorry I’m being very bossy!), then phone his secretary and ask for an email address. Usually that would be the secretary’s email and she could forward it. I would further copy your GP as well as your MS nurse into any such letter/email.

If you still don’t get anywhere and want the chance of a DMD, you could ask to be referred to an MS specialist (assuming your Dr is not one!) and/or contact your hospitals PALS (Patient Advice and Liaison Service) and ask for their assistance.

We learn very quickly to treat our doctors as ‘special’, with occult powers and knowledge. We find it very difficult to disagree with a hospital consultant when they have all their years of study and experience to give them the confidence with which to make pronouncements which affect us. But you should also have a part to play in tohe decisions related to your care.

I hope I’ve not been equally arrogant and obstreperous in this post. I just feel strongly that the newly diagnosed should now have the benefit of the drugs which did not exist in 1997 when I had my first relapse. Tell me to butt out if so! I’m a grown up, I can handle it. I just hope your neurologist is!

Sue

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What’s the point in waiting until you get worse, before starting treatment?

Thank you @Ssssue for your comprehensive reply and information links.

I am in the process of drafting a letter to my Neurologist and what you have said here has just confirmed what I already thought, that I probably should have been prescribed a DMD 4 years ago when I was first diagnosed.

At the moment, anger is driving my response, so I might have to wait until I’ve calmed down a bit before I send it. The thought that permanent damage to my sight could potentially have been avoided, is making me very mad indeed!

My current diagnosis depending on who I see or who writes to me, is either:

  1. SPMS (With Relapses)
  2. SPMS (Transitional)
  3. SPMS

I think the way MS in general is labelled can be confusing.

I try to not dwell on the title of my MS if I’m honest.

My sister who was diagnosed well over 25 years ago is still RR, yet due to the relapses that she’s suffered her symptoms are far far worse than mine.
She was put on a DMD after one very nasty relapse a couple of years ago, which left her in her current state.
If she had been put on DMD’s earlier she might of avoided that particular relapse ?

MS is what it is, you can be RR for years and live in fear of progressing to SPMS or even PPMS, but then out of the blue you get that one nasty relapse that changes everything in an instance.

My point is, the titles of MS can be a bit misleading, dont think you’er safer at RR.

This is just my opinion based on my own experiences and seeing how MS has changed my life, my sisters life, and one of my cousins.

I just thought, first, ask the neurologist his reasons for refusing to prescribe and second, you could ask if there is another neurologist you could be referred to if your current doctor cannot/will not prescribe DMDs.

Maybe you could look for a specific MS specialist neuro, either in your hospital or a nearby alternative? You can check on specialisms by looking on the hospitals website. Then ask to be referred to him/her.

You are absolutely right to wait until you’ve cooled off before writing your final draft. Come across as reasonable, sensible (pretend the doctor is also both reasonable and sensible!) and you’re more likely to get somewhere. I tend to use the approach of pretending whoever I’m writing to is rational and approachable even when they are anything but that!

Sue