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Labelling MS

I started writing this yesterday, but have learned something new today. This was where I got to yesterday:

These labels that are attached to our various forms of MS bug the hell out of me. When is SPMS not SP? And when precisely does RR migrate to become SP? How on earth do the neurologists justify SP with relapses? Is it not still RR but with disability progression?

Can we not find a more efficient way of demarking our various versions of MS? Yes, there’s the ‘Advanced’ label, which many people think is a good way of describing more severe disability. But that then doesn’t really do it properly. And supposing you have relapses but are SP, is it possible to qualify for DMDs?’

Then I saw my Rehabilitation Neurologist today. He gave me a new way of describing progressive with relapses: Active Progressive. We were discussing my recent relapse and the stunning recovery I’ve had. Amazingly some symptoms that I’ve had for the entire 7 years I’ve been seeing him have improved following a recent relapse, and a course of steroids. One thing that I thought was impossible was that my foot-drop has marginally improved. He said he’s never seen that happen before after seeing hundreds of patients with foot-drop. He has agreed with me that there’s definitely been a relapse and suggested that DMDs would potentially be helpful. So I said I might find it hard to have them justified (after having been labelled as SP), which is when he came up with the notion that neurologists are starting to divide progressive into ‘active’, meaning there are definite periods of inflammation, and ‘non-active’. Which could mean that a neurologist might find it possible to get a DMD prescribed.

So he had already done an MRI and noted 2 new enhancing lesions, thus giving clinical evidence of inflammatory activity, thus a relapse (or even two as I’d a couple of months before noticed symptoms of what I’d thought was a potential mild relapse). He had already referred me back to an MS specialist neurologist who is able to prescribe DMDs (which he can’t). Today he’s even more convinced and is writing again to hopefully bump me up the queue a bit.

Are there others with the SP label who still have relapses? Anyone been described as Active Progressive? And has anyone with SP then been prescribed DMDs following further inflammatory activity?

Sue

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You have probably seen this video from the Barts Team already, but it explains the advanced MS label pretty well, in case others are interested.

Hello,

I think the film is very good in so many ways,c it describes the disease so elegantly. Multiple Sclerosis is the same disease regardless of the label people like to use. The different stages were a pharma invention to identify the low hanging fruit so they could develop and sell drugs to slow down progression

There are people newly diagnosed who can receive DMT or the rest but everyone has just good old multiple sclerosis. It is different for everyone because there are zillions of nerves that can be attacked Most of the newly diagnosed have inflamation or bruising of the myelin but no long term damage.

I have had relapses but very small and not active but I am seriously disabled after 46 years of MS with an EDSS of about 6.5. Just call it a slow burning Long Term Condition.

Patrick

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My MS has been described, by the MS clinic as, “SPMS” or “Transitional” and even, “SPMS WITH Relapses”.

The spasticity clinic that prescribed the Sativex has me down as RRMS !

In regards to DMD’s they (MS clinic) argue that I’ve not had the “right amount” of relapses to go onto DMD’s, and now that I’m SPMS (depending on who I’m speaking to and probably what day it is), I wouldn’t be entitled to DMD’s anyway as they are no good for SPMS.

Yet one of my titles is SPMS WITH relapses !!!

It was my MS consultant who gave me that title , but also said I couldnt have DMD’s as I was SPMS

Its no wonder that we lose confidence in our treatment & care.

My latest MRI though showed no new lesions or current activity, yet I’ve definitely got worse over the last 12 months.

They put this down to wear and tear on exposed nerves and not actual relapses, hence no DMD’s.

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One of your posts yesterday was what started me writing a big rant about what the F is going on with us. SP but with relapses! But does that mean we can or can’t access DMDs? That’s the point I was making today to my rehab dr. That I’m not sure I’d fit the criteria - categorised as SPMS, plus having no clinical evidence of 2 relapses. Plus for me it’s the fact that I’ve had 4 DMDs and bad side effects from 3. I do actually have 2 new lesions, so that some proof that there’s still action neurologically.

But, my rehab doctor’s given me yet another way of describing the same thing. I don’t know whether that might translate into anything positive. I think about your sister and her horrible relapse, I really don’t want one of those, and to some extent it was comfortable being safely SP - no relapses. But now I’ve had a biggish relapse albeit one that’s given me some positives, and that’s put the frighteners on me. I don’t want another relapse equivalent to what put me in hospital, then rehab, then unable to walk, and never really getting past that one.

Sue

Like you Sue I worry that being SPMS is not as “safe” in regards to having relapses as we think it might be ? It’s just so frustrating that theres so many different answers and opinions from these “professionals” when we enquire about DMD’s and tell them our concerns !!

I gave up on worrying about what type I have. Truth is they don’t really know anyway. I have been labeled rrms, then spms and now ‘benign’ after having had it nearly 40 years. Each time I get a new neuro they know best and change the label. I dont take any notice of them and stopped going for appointments that were a waste of time.

Hello, The basic fact of the matter is that NICE, who set the restrictions on what can be prescribed for what, do not allow DMD to be prescribed when you cease having relapsing remitting MS. Rum old business

I’ve given up with all the labels too. When I was first diagnosed in 2004, I was told I was primary progressive. In 2009 after a few relapses, I queried the diagnosis and it was changed to Progressive Relapsing!! Just one year later in 2010 my notes suddenly described me as Secondary Progressive. At my last consultation, which was in 2015, I again queried my diagnosis, and my neurologist told me it doesn’t really matter what the label says but you have progressive MS. On receiving a copy of the letter that he then sent to my GP, he had described me with Progressive MS with an EDSS of 7 !!

I told him not to bother sending for me for any further appointments, unless any treatments or trials came up that I might be suitable for. Now I just carry on as best I can.

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The big difficulty is that once given a specific label, ie progressive of whichever type, if you then suddenly start relapsing again, how do you access DMDs? As Patrick said, it’s all about NICE and their flipping criteria.

I reckon Jactac and I are in a similar boat as in potentially wanting to be on a DMD (assuming there is one which isn’t ruled out given my history of side effects!) when my label was altered to SP a couple of years ago.

i completely understand why people with Progressive that’s not changing, or at least, not relapsing, give up on their neurologists.

But I suspect that there are very many of us who do not fit neatly into their handy boxes marked RR/SP/PP/Benign.

If we accept that essentially we all have a variant of the same disease, how useful is it to label us and say: ‘this category can have modifying therapies and that category cannot’?

Sue

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Hello all.

I’ve been ruminating about my “label” for some time now. Presenting with three episodes/relapse in as many days, I was initially dxd as rrms from the start, May 2015. Settled on Techfidera and all seemed well. Another whammy September 2015 saw me leaving hospital needing a crutch. My mobility deteriorated rapidly. I was needing a wheelchair for any distance within eighteen months. Regular MRIs showed no changes, so it was deemed that as there had been no further relapses and no activity my ms was ppms. So no more DMDs.

I can now barely shuffle/drag myself around with a wheeled walker indoors (I would use a chair but our doors aren’t wide enough) and a chair outside. My right arm is weak and I have no grip with that hand. This means I can no longer write or cut my food. I struggle to get everything down in time to use the loo. Not always successfully. :frowning:

Early June I was admitted with the same episode that started all this. MRI done again. IV steroids helped again, however my Neuro was adamant it was not a typical relapse, but symptoms exacerbated by the heat of that weekend, and a chest and uti which I was asymptomatic. Who was I to argue?

So, when I see my Neuro again in January I now intend to argue, beg and plead to go back on Tec. Whether I have/had relapses or not, can I not be given the chance to slow the progression of this bastard disease?! Whatever label it is given?

Hi Poppy

Do you know if your MRI showed any recent disease activity? Ie new lesions / enhancing lesions? If it did, then I think you are in the same position as me, ie RRMS changed to progressive (only definitely secondary in my case, whereas yours is debatable I should think; if the Tecfidera was initially helping and / or there was evidence of ‘silent historic lesions’ then that could have been labelled SP rather than PP). My MS has been quiescent for several years even though I’ve not been on a DMD since November 2015 when I stopped Tecfidera due to low lymphocytes. Until this year. And there’s been I think two defined relapses with remission, the second with steroids. I have got 2 new enhancing lesions.

So I’m waiting to see a neurologist again who will perhaps consider whether I can be relabelled RR and maybe restart a DMD. If we can find one that’s not going to screw with my lymphocytes, liver, or cognition.

As I think you know, I can’t even shuffle around without FES, and even that’s only a few metres a couple of times a day otherwise I’m wheelchair bound and have an EDSS of 7.

I’ll let you know whenever I get to see the MS neuro. My rehab neuro (who can’t prescribe DMDs) is writing again to the MS specialist to ask for my appointment to be treated as ‘urgent’. We’ll see if that has any effect.

Sue

Hi Sue. I’m told my recent mri was “stable”. No change. When I gasped “really?!, nothing new”? She asked me did I not believe her, with a glint in her eye. (you are probably aware of the great relationship we have by now. Seriously) Even if I cajole her into prescribing Tec again, I’m not sure it will even help. I think psychologically, it will make me feel I am doing something about it. Keep me posted Sue x

I’m always shocked when my MS consultant tells me nothing new on the MRI’s, no new lesions or signs of activity.

My last 2 MRI’s over the last 2 years have been stable, yet my mobility is a mere shadow of what it was 2 years ago ?

They just keep telling me it’s down to wear and tear on exposed nerves, and it’s “good news” that nothing is showing as new or active.

But is it really good news if your deteriorating without having proven or identifiable relapses ?

I think would rather be taking a DMD as a precaution just in case theres one stinker of a relapse lurking around the corner just waiting to destroy everything.

It only takes one bad f**ker to completely change your life.

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Hello,

I think we have all got to hope that the MS-Chariot trial gets the go ahead. This trial using the drug cladribine (trade name Movenclad) is aimed at people who are excluded by the current criteria for DMD but their MS is getting worse. Sadly unable to find out the exclusion criteria. It is already available for people with RRMS

We should know within a month if trial is approved.

Excellent point Patrick.