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MS - one disease with many differences - some things I’ve been thinking about ...

MS is a peculiar beast. We tend to consider that there are 3 main groups or types of MS, relapsing remitting (RR), secondary progressive (SP) and primary progressive (PP). Within the various sub groups, there seems to be many symptoms in common, so many of us have spasms and spasticity, tremor, fatigue, Lhermittes sign, weakness, optic neuritis, foot-drop, cognitive decline, speech and swallowing issues, bowel and/or bladder troubles among all the others. And let’s not forget pain. For decades, doctors argued that ‘MS doesn’t cause pain’. Sheer nonsense. Only someone without MS could even dream of making that statement. Pain does come in a variety of forms, from burning and aching, painful spasms and on to the extreme pain suffered by people with Trigeminal Neuralgia, and other experiences of pain, not to mention our countless bruises, grazes, pulled muscles and other injuries due to falls and general clumsiness. So many symptoms are associated with MS, no one has all the symptoms, even though occasionally someone undiagnosed claims to definitely have MS (in spite of never having seen a neurologist or had an MRI) because ‘all their symptoms fit’, or even that they ‘have all the symptoms’.

Then there’s the phrase ‘benign MS’: doesn’t that sound nice? Like the kind of MS that’s hardly even there. And benign MS is really only diagnosable in retrospect, after 15 or so years with no relapses or progression. Even then, subtle changes could be taking place within the CNS which only come to light later on. If MS is really ‘benign’ would you even notice it?

But these labels for the sub-groups of MS don’t actually seem to mean a thing. RR and SP seem to share a beginning, although not everyone becomes progressive from the relapsing variety.

Some people also appear to continue to relapse after their RR has been accepted as having migrated to SP. the question here is really whether in fact they remain relapsing remitting. PP is definitely different, in that it never has a relapse/remission phase, it’s just a straightforward progressive illness from the get go. Or is it? Let’s not forget that PP may in fact have initially been RR, just not investigated, so in some cases, the initials PP should really read SP! And in any case, some people with PP have days when their symptoms are terrible then go back to ‘normal’ awful. In fact some people with PP have weeks of worsened symptoms before improving again. This seems to be unexplained. It would make sense if we could call this relapsing, and indeed, it seems possible that some researchers and doctors do consider some people with PPMS to have relapses, similar to the way people with acknowledged SPMS have continued relapses. Such an argument does of course lend weight to the fact that MS is but one disease, not several different disorders just conveniently grouped together.

There’s also the phrase ‘Advanced MS’. You could have RR, SP or PP and rightfully adopt the word Advanced. It reflects having had a lot of disease activity and some appreciable disability. If you have Advanced MS the likelihood is that you need at least some some help with personal care, often considerable help. And possibly the reason why some people have seemed to become progressive but with continued relapses is that their MS is Advanced, yet still actually RR.

The other very confusing thing is once you’ve marked out the varieties of MS as relapsing or progressive, the temptation is to define any variety of progressive as ‘worse’ than the RR kind. And that is just not true. For many people, relapses are more disabling than some people’s gentle progression. And for others, progression hurtles along, leaving the individual badly disabled within a short time. So maybe we really should be using the word Advanced more frequently?

It seems that the biggest difference, and the one which seems most unfair, is that there are many disease modifying drugs now available for RRMS. There are none for PPMS. The PP community have recently been given the seemingly good news that there is now a drug which can affect the rate of progression for PPMSers. Ocrelizumab, aka Ocrevus has been given a license for both RR and PP. But the decision makers at NICE have pulled the rug out from under the feet of the PPMS community (as if they needed extra trips to the floor) and refused to recommend that Ocrevus be made available for PPMS.

This of course seems just like another two fingered salute has been given to the PP sub type. Ocrevus has been shown the green light by NICE for RR. As if the relapsing remitting group needed yet another DMD to add to the 12 already available (if you count all the different methods of taking the various interferons and Copaxone)!

When you look a bit more closely at Ocrevus, it’s not quite such the magical drug it seemed to promise it would be at first. It’s not massively effective at preventing progression and yet comes with a long list of side effects. Many people with PPMS might have been reluctant to take it for this reason, but it should at least have been made available to them. And if economics are the driving reason for refusing the drug, it seems to be even more unfair.

But it does bring me to that bug bear: side effects. These are many, potentially severe, can lead to serious health problems and are always the cost to be balanced against the benefits of the various disease modifying drugs (as well as other drugs prescribed for symptom management). What with elevated liver enzymes, gastrointestinal problems, depleted white blood cells, PML, autoimmune thyroid disease, and all the other pesky problems the taking of DMDs can bring about. Many of them are resolvable once the drug is stopped, and some are not. Clearly death due to PML would not be easily resolvable.

My first point is really my last, we do share many aspects of MS, it’s not just a title. We share many symptoms, we frequently share disabilities, we share treatments and drugs for symptom management, we share fears for the future. Unfortunately we don’t share the number of available disease modifying drugs. As yet, hopefully in the future we will, irrespective of cost to the NHS. On this forum we share advice and help given to the newly/un-diagnosed. We share experience and concerns, worries and cares. We share our knowledge and experience of claiming state benefits, access to care and our use of aids and appliances. We’ve shared our use of less traditional therapies, drugs and treatments, including diet, exercise, HBOT, cannabinoids (containing THC and/or CBD), LDN, vitamins, minerals and myriad other means of treating MS. Our lovely families and carers also share their experience, worries and concerns. We also share laughter, sadness, celebrations, good fortune and bad, our lives, music and recipes. We do the best job we can of living our lives in spite of MS. In fact we are a community.

Sue

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Wow Sue what a post! I would like to add that not all RRMS peeps get offered DMT or there is a delay. Yes, I’ve come to a definite conclusion MS is like me, unpredictable and doesn’t fit neatly in any specific tick box.

A great post Sue. You have wrapped it right up. Incidentally, the new Ocrevus isn’t for people who have a history of cancer, I was informed by my neurologist. Thus snatching away any hope of getting it prescribed even before NICE did.

I think this forum is a great little community. I would really miss it if it wasn’t there! It’s good to be able to pop in and out as and when the mood takes me. Apart from the really useful information available, I like the rants, the recipies, the laughter, the ramblings. I love being able to talk away to myself on here, when I need to unload some of the pressure in my head. What’s more, no one can see my tears on here…

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well said poppy,

i feel the same and i got a lot of support when newly diagnosed.

keep on doing it forum!

The guy with a right leg which is steadily packing up with no improvement from day one, a left leg which has periods of weakness but recovers , a right arm which used to ‘work’ but now doesn’t could be said to have ppms rrms spms all at the same time. I guess most of us have bits that work well, other bits that don’t and bits that sometimes work well. These categories are completely flawed!

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Gee-Wizz Sue,

I just took a peep into this forum and found your latest dissation! Very informative to us msers… thanks.

My gp says multiple sclerosis is a condition not a disease! What ever…ms stinks!

***** forum

Sssue,

You’ve put it in a nutshell (large one but there’s lots to say about MS!)

Thank you and I hope all the current and new members (& their loved ones) get to read it now and in the future.

Tippy x

Thank you for all your comments. This piece of writing came from an ongoing conversation with a good friend of mine Mr A.Nonymous, together with my own musings and the various questions and comments that are made on this forum. I just decided to write it down and try to make some sense of what ultimately doesn’t always, ie MS.

Thank you to my friend (Mr A) who also read it and made comments before I posted it. It was a big help. So thank you all for contributing to this wonderful community and for being here.

I know my thoughts aren’t the answer, but more a springboard for people to decide for themselves what they think about this bluddy MS thing.

Sue x

Hello Sue,

Your thoughts are much appreciated and very helpful. There is one thing I have myself which is muscle cramping or spasms what ever you want to call them and yes they are so painful I cannot explain how much so. I have recently seen the ms specialist nurse and she wants to put me on some tablets for this but has to speak to my doctor first. This was three weeks ago but I have not heard anything yet. What tablets would they be? I have forgotten what she said they were. My Neurologist does not want to put me on DMT he said I don’t want to put more poison into you (which I thought was odd) but I am guessing because I am on a lot of meds for other things already.

Anyway Sue I hope you are well at this time and thank you.

Love Curly x

Hello Curly

Your nurse might have been talking about Baclofen. It’s the most commonly used drug for spasms and stiffness. You need to start them slowly because they also cause muscle weakness. As you can imagine, you need a certain amount of stiffness in muscles to hold you up and if you loosen the muscles too much it can increase your wobbliness (assuming you have any of that!) So you could ask your GP yourself, they come in 10 mg tablets, so start gently, take one tablet 2 or 3 times a day, be careful and increase gradually if it’s needed. Or whatever your actual doctor tell you to do!!

Re the DMDs, yes, you do have to balance side effects with benefits. And if you’re already taking a lot of drugs I can see the point. But, if you are having a lot of relapses, it might be worth talking to your MS nurse and the neurologist again. Taking a drug that might cause side effects might be considered better than risking a nasty disabling relapse.

Sue

Thank you for that Sue,

I think that you have an argument that deserves a much wider audience. In another comment in which you quoted from Barts Blog http:

http://multiple-sclerosis-research.blogspot.com/search?q=Primary+Progressive+relapse

Assumptions about PPMS have become entrenched as dogmas. Among these is that PPMS is not inflammatory. PPMS is inflammatory, but not picked up because the inflammation is occurring below the threshold of the MRI. Therefore there should be possible to treat this low level inflammation that causes demyelination. All we need is a test for inflammation. How difficult can that be?

Another point that crops up occasionally is the relationship between MS and other autoimmune diseases. Again from the same Blog we read; “There is significantly more inflammation in secondary progressive multiple sclerosis than in primary progressive disease.” This includes an inflammatory dermatosis centred around superficial or deep skin blood vessels." Which is dermatitis or eczema. I had a very severe skin problem about five years before I got clinical signs of MS. The skin specialist would not accept it was anything more than an allergic reaction. I wish that I had been investigated for autoimmune disease then as I now have PPMS with no hope of any treatment.

Anthony

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wow sue-that made me shed a tear or two! brilliant writing-thank you!

el x

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Yes very well written. I have noticed all my friends with PPMS non have foot drop. Non have ON. Most of them its waist down with slow progression of mobility. Yes some have sensory issues, but nearly all have fatigue and balance issues. My friends with RRMS, seem to have more foot drop, again balance, fatigue, and cognitive issues seem worse as is speach, some slur and sound like they have had strokes. Their gaits seem more pronounced. Maybe would be interesting to do somethiing to compare symptoms. You see i was diagnosed in 2016 with PPMS, yet mine started in 2000 with blindness and eye issues. the main start was 2006 when my legs were so stiff and crampy i simply could not walk or get out of bed. then periods of sort of recovery but never ever without stuff going on and on 247. I havent had one day without something. I often wonder if benign MS was in fact M.E. I did find a paper written by some people in netherlands i think who thought it was benign MS, as the symptoms are so similar and M.E. is classed as a neurological disorder. Yes very interesting. If we have same types of symptoms how come PPMS can not use the same DMD makes no sense, what makes RRMS different to treat from PPMS. the fact meds dont work for PPMS shows its not the same disease but could be a morph of that disease. thanks for writing all that i really did find it interesting.

an interesting thread.

DMD’s are said to reduce the frequency and severity of attacks in people with rrms.

Why are DMD’s not available to people dx’d with ppms - why wouldn’t the DMD’s ‘protect’ the bits that are unaffected - is it because rrms and ppms are two different diseases.?


My own rather cynical view is that the neuros know very little about m.s. and its treatment - I think that medics dislike a vacuum and have filled this vacuum with a load of gobbledegook (sp.)

The ‘definitions’ of ppms/rrms/spms are very imprecise and often a stab in the dark. There is a worrying vagueness about

the efficacy of these powerful drugs which we may be offered.

Ask your neuro to show you empirical evidence which proves which type of m.s. you have. Ask your neuro to show you evidence that a certain drug works.

Are we being, dare I say it, conned?

Cracking post Sue. Very interesting. Thanks. Anne

Thankful sue and all whom commented. Very interesting and informative. Super helpful for me. A emotional read again sue. Thanks lol! Unless I’m a softie. I do appreciate it though xxx

What a wise and thought-provoking post Sue.
I have been considering asking for Cladribine/Mavenclad, but the potential side effects have put me off.

Even then, it is only officially approved for RRMS, even though it seems to have some benefit for SPMS

Perhaps the Society needs to start a campaign to see that everyone with MS (Dx-ed or just suspected) sees a neuro who does specialise in MS. Then those with SPMS might just get some help.

Geoff

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I think the reason DMDs wouldn’t work in general for PPMS is that they work on inflammation. And there doesn’t tend to be any for ‘most’ PPrs.

The link Anthony put up from the Barts Blog explains this quite well.

As he said, there needs to be a test for inflammation - or perhaps everyone with whichever kind of MS should have a 3T MRI of brain and entire spine at least once a year. Which isn’t going to happen in the short term for people with Progressive MS (PP or SP) because they’d probably only get positive responses showing inflammation on a tiny proportion of people. So a huge expense for the benefit of just a few people.

In actual fact, I’m waiting for an appointment for an MRI as I feel there is some disease activity, possibly inflammatory, even though I am SP. But I am fortunate in that I have an excellent neuro rehab specialist who is arranging it (after I wrote to him and suggested it, giving him my reasons).

Sue

I’ve often wondered whether any of the MS nurses or even Neuros read any of our posts. I personally think if they ever did (especially this thread) it would be beneficial to them and us. Suppose they’re all far too busy with their day jobs.

Tippy x

Brilliant as always Sue knew it would be! xxxxx