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Labelling our MS

Relapsing Remitting / Secondary Progressive / Primary Progressive / Advanced / Benign ???

I think we’ve all become very hung up on the labels we give ourselves, or are given by other people. I was diagnosed with MS. Not relapsing remitting MS, just MS.

It became clear immediately that I was on an RR course and so I started on the DMD treadmill. And for me it has been a real treadmill, going on and off drugs as they either stopped working, or gave me severe side effects. First on Avonex, then off it because of very scary severe cognitive problems, on Copaxone which worked pretty well for a few years, then off it when it stopped working. Then a wait while prescribing centres were set up for the newer drugs. Then on Tysabri, then off it because of hepatitis, then on Tecfidera, then off it (this time because of a drop in Lymphocytes).

So this time I’ve been off a DMD for 2 years. And in fact over the nearly 21 years that I’ve had MS, I’ve only spent 5 years on a DMD. And my neurologist finally took the bull by the horns and said ‘it’s progressive’. I’d actually assumed that it was progressive for longer than this. But for as long as I could qualify for a DMD it was labelled RR.

And I completely agree with the newer label of ‘Advanced’ MS. And I’d be using that all the time if people only got what it meant.

So guess what? I seem to have started a relapse. Or a scarier thought: perhaps it’s suddenly progressed to a point that I can’t walk even a couple of metres with the help of FES and a walker. Within a few days. So I’m choosing to call it a relapse and to take some steroids and hoping like hell they kick start my system and chase that relapse right away.

But why do we have to have a label for our MS? There are lots of people who are diagnosed with Primary Progressive MS, who were actually having mildish relapses for years before diagnosis, so would it not make more sense to call that Secondary Progressive? And there are many people with RR who are way more disabled than lots of people with a Progressive label. Yet we all seem to think that a diagnosis of Progressive MS is likely to include more disability than the Relapsing variety, regardless of the fact that inflammation causes a hell of a lot of damage (as many of us can confirm). And anyone like me who’s spent most of their 20 or so years of ‘RRMS’ without the benefit of a DMD knows very well than relapses equal nerve damage which equals disability.

Then of course, there’s the ‘Benign’ label. Which has been the subject of some debate off and on over years, including this week. Is a benign course of MS possible? Probably. But is it fair or sensible to start out with that label? I doubt it. Since no one knows what will happen next year, or even next month, it seems reasonable to me to take out an insurance policy of a DMD even if the course of the disease is likely to be benign. And how I wish someone could come up with a less comfortable title for a mild form of MS than ‘benign’.

So what do you all think? Are you happy with the label you’ve been given? Are you terrified that your RRMS is turning into SP? And is that a reasonable fear? Should we actually be welcoming a translation from RR to progressive? It might mean that our disability progression will slow down. And we can stop taking a DMD that for some of us has been like taking one type of poison after another. But then maybe that’s not such a good idea, if I can have a relapse after 2 years without one, during which time my MS has been relabelled SP. I’m sure that’s why my neurologist kept me labelled as RR, just so that I continued to qualify for DMDs. And for most people that would have been a good thing.

Sue

I am much more interested in how my MS is behaving than in what other people might choose to call it. Mind you, I would love to have regarded myself as a person with ‘mild MS’ (or something similarly vague and comforting) if the opportunity had ever arisen, particularly in the early days. Alas, no nice label was ever big enough to hide my MS’s bad intentions. So I stopped worrying about labels and reached for the Tysabri. :slight_smile:

Alison

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A very good thought train Sue .

Im begining to think its just ms that in due time will get worse , all these labels .

Its like your sitting round a table full of ms sufferers of various labels , its bound to turn into a bun fight ,"mines worse than yours " I was told Oct 5 i had ms i was pretty sure i had it anyway , but the neuro confirmed it . He said it was between rrms and spms , i thought this strange , as surely its one or the other and he needed to make his mind up .

Im not casting dispersions but call me a synic if you move out of the rrms box asap are you taken off dmds , saving the NHS a boat load of money , i dont know and i may well be talking tosh .

Anyway i will soon find out what box im in , but all i know is my short term memory is shot , and i cant walk properly anymore and quite often use a stick , plus various other boring bits and pieces . What box does that deserve at im between rrms and spms lol .

Iain .

I might have been diagnosed with MS sooner if I’d chased the results of my eye tests and then followed up on them. On the other hand, I was quite happy to tell people that I’d had optic neuritis and leave it at that. I might have worked myself into a state worrying about whether my condition would progress and where it would take me. I’d have been given the label of benign MS and left to get on with things, which is what I did anyway minus the label. And, yes, aside from the dead patch in the middle of the field of vision in my left eye, the MS was benign.

Regarding labels, my mobility is decreasing. I’ve gone from walking with a stick to needing a rollator. I may have to start using a scooter. In spite of this my neurologist says that I have RRMS, presumably to keep me on DMDs. I haven’t had a relapse for some years, possibly because of Gilenya, but my mobility is still getting worse. Am I now progressive? Who knows? Who cares? A label is a label and doesn’t affect how I feel or how my MS affects me.

Would my MS have gone from benign to RR if I’d been given medication? It probably would. I got optic neuritis in 1989 and the only treatment available was steroids, which didn’t always help. The damage had been done by the time I got the diagnosis. I don’t know if there’s anything available today to slow the development of benign MS. Research probably focuses on treating the “more serious” forms.

I firmly believe that the labelling is confusing. You either have MS or you don’t. People who don’t have MS, or have close links with somebody with MS, seem to think that RR means that you have times when you do not have MS at all !! The label applied to me is RR which was given by neurologist in 2015 based on my having had 3 episodes of optic neuritis (the first one of which was over 30 years ago). His very words when deciding to send me for MRI where and I quote

I know my husband was just trying to reassure me that all was well. POOR MAN ATE HUMBLE PIE WHEN I GOT THE LETTER CONFIRMING DIAGNOSIS AND REFERRAL TO MS NURSE!

According to the Barts Blog there is only one type of MS. “MS is one disease and not two or three diseases. As we have said before, the division of MS into several diseases is not backed up by science. This false division of MS into several diseases has become counter-productive to the field of MS. The division of MS into multiple diseases was Pharma-led to get MS defined as an orphan disease. This helped in that it allowed interferon-beta-1b to get a licence based on the results of one pivotal phase 3 study”. Multiple Sclerosis Research: Advanced MS

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I don’t care what you call it. It usually hurts when I move.

That’s what a neurologist said to me in 2009. I was to old at 54 to suddenly have MS!

In 2010 he said I have PPMS. And he wasn’t humble about it either. Ghastly man.

hiya sue

i once told a neuro-called it macaroni if u want-its just another label to me.

must have been thinking about my evening meal that day!

i know it may be of use when deciding re drugs/treatment but as i wasnt offered any for 8 yrs them wham huge disabling attack where my life changed within hours and then i was offered tysabri. too little, too late unfortunately. so my choice was be a bitter angry lady or cope with the hand that i have dealt and cheat when u have to (my wise brothers advice!)

so life is lived-not just an existence. i dont pretend to be happy-i am actually happy!

i enjoy reading other folks experiences on here cos they are all so different-we all cope in so many varied ways!

ellie

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Hi Sue, I was sorry to read that you may have had another relapse and do hope your walking improves. I was told five years ago that I was far too old to have MS and I was diagnosed with TM and told I would make a complete recovery within two years. There was no recovery and in 2015 I developed foot drop and in June 2016 I was diagnosed with progressive spinal cord MS. When I spoke to an MS nurse she said oh doctors are still sitting on the fence regarding diagnosis. I have not been prescribed any treatment as the MS is thought to be progressive. I have found that neurologists are struggling to place me in a certain category. My last MRI showed no specific brain lesions but quite a few spinal lesions. However, within two years, I have progressed from walking my dog daily to needing a stick, FES, orthotics and qualifying for a blue badge. So apart from medication issues I will not worry about which category I slot into - it is what it is!! Sue

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Spot on Sue.

All of our body parts don’t fit into ONE m.s. category.

I’ve always argued that one person can have more than one type of m.s. at the same time. Say I have a right leg which is gradually weakening without any let up - my left leg is sometimes very weak, other times o.k. - I have bouts of optical neuritis but vision is o.k.

I could argue my right leg has SPMS, left leg RRMS, eyes - benign m.s.

Most neurologists will keep you labelled as RR for as long as possible in order that you continue to qualify for DMDs. This I think / thought was the reason why mine kept me classified as RR. Until I ran out of DMDs. And even then he was vaguely mumbling about Cladribine before sticking a line through that too - given my previous history of side effects, it’s a bad idea to try one with a long half life. Could be a recipe for utter disaster. And I think in general no one’s going to claim to be worse than anyone else. We mostly accept and empathise that MS is crap no matter how it’s treated you or what it’s called. I imagine you’ll be kept in the RR/SP box for quite a long time as it tends to be only in retrospect that we can establish what/where we are within this bollux called MS. And as for short term memory, who are you again? Have we met? Sue

Love un hugs guys & girls, I really hope you all know how much you help me, I don’t know if I would be dealing with this if when I was struggling you did not respond with understanding ( you guys responses work) non ms people always seem to say the wrong thing, not because they are ‘bad’ just they don’t really get it.

The whole point of the labels is to facilitate communication between medics.
They then got picked up by NICE as a way of deciding who got treatment (as treatments became available).

Now we get descriptors without definition (Benign MS is an example), although i am sure that officialdom will “soon” produce one - probably after “big pharma” produces a drug for it.

Aggressive MS? Well I have gone from TM to RRMS to SPMS in just 10 years - I call that aggressive (and a few other things which feature the Army’s universal adjective - f****).

It’s not just MS - my wife (currently in hospital with a foot infection) has had her Parkinsons Disease labelled “Complex Parkinsons” - now WTF does that mean?

Geoff

I agree that there is only one disease called MS. However, the disease manifests itself in different ways. Some people have relapses, some just get steadily worse, some start with relapses and then switch to a moreorless steady worsening, some don’t show any change in their symptoms. To me the labels are just ways of differentiating between the variants, rather than calling it a different disease. Doctors seem to believe that a drug that works for one variant won’t work for another. I’m not a neurologist and I don’t work in research, so I don’t know how far that view is justified. I just take the drug my neurologist prescribed and hope for the best.

I was diagnosed with RRMS in February last year. However - I did have symptoms of MS back in 1980 which was never actually diagnosed as I don’t think they had the same diagnostic tests that they have now.

So - after my current symptoms started and I went to see a neurologist the first thing she mentioned was MS. “Oh No” says I - “I had symptoms 35 years ago and it wasn’t MS” to which the neurologist rather smugly said “There is such a thing as benign MS”

Cue rug being pulled from under my feet.

That being said - what you call it doesn’t matter one iota. It is what it is and there’s not much can be done about it.

To quote a line from Madagascar…“Smile and wave boys, smile and wave”

I was diagnosed with PPMS in 2011. However in every letter from the neurologist since then he has called it slowly progressive MS.

When I got my diagnosis the neurologist, simply told me, “You’re right. It’s MS.” At that point I wasn’t aware of the different types. It wasn’t until I joined this Forum and started to read the posts that I realised that there were these categories.

It occurs to me that being able to distinguish between a whole bunch of symptoms, their severity and frequency is more useful to medical researchers and pharmacology than ourselves. If an academic is writing a paper about their research into one small aspect of the disease they HAVE to give it a name.

Perhaps my neurologist wasn’t being lazy. Perhaps he thought that trying to distinguish between one person’s signs and another’s was pointless.

Anthony

I was diagnosed in 2013, I was told later that the weak arm I experienced in 1994 was probably a brief encounter with MS diagnosed at the time as a virus. I was only ever offered a trial drug, which to the annoyance of the neurologist, I declined. I was never told what type it was and didn’t know until I read a letter which stated it was spms - straight in no messing. As far as I am concerned it is what it is, call it what you like but MS does what it wants, when it wants and how it wants, why waste ink on giving it fancy names. Need a cup of tea now after that outburst.

So in other words, MS is a nasty bitch. Whatever variant you currently have it named as. And she will do exactly as she pleases, whensoever she likes.

I think on balance, that I agree with the Barts Blog link that Whammel posted. MS is one disease it may manifest in different ways at odd times, but ultimately labelling us into all the different categories isn’t especially helpful. And Dr G is boss.

I am going to retest my wee tomorrow morning and then start the steroids, assuming there is no infection that appears overnight.

And once I get over the horrible steroids, I shall hopefully revert to normal levels of crapness.

Sue

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