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.