Will the real MS please stand up?

Has the medical world classified MS wrongly? Ian Cook reports

When I was diagnosed with multiple sclerosis (MS) back in 1993, I was told my condition was relapsing. I was also told that after several years this relapsing phase would likely move on to secondary progressive MS where existing symptoms just get worse and worse.

However, according to an eminent British professor of neurology, this is not what the ‘real MS’ is like, and his view chimes with my own experience. Prof. Gavin Giovannoni of Barts Hospital in London has also made the rather startling comparison of MS with leprosy, but more of that later.

My experience

Back to my ‘MS journey’. Yes, there were early relapses in my own MS but it did not ‘jump’ neatly from the relapsing phase to secondary progressive. Progression, or to be accurate, progression independent of relapse activity, something known as PIRA, was there right from the start.

My first brush with MS, or the first time I sought medical help, was back in 1987, aged 29. I woke up one morning and found my left hand was useless. I couldn’t button my shirt, or tie my shoe laces. Fortunately, the symptoms started to improve after a week and by the time I finally got to see a neurologist a month later everything was pretty much back to normal. This was a classic relapse.

Progression and relapses

Around this time, I was also having problems urinating. It was difficult to pee and I didn’t feel as though I was fully emptying my bladder. This problem, unlike the hand problem, did not go away. It just gradually got worse over the years with me starting to use catheters around 2010. Looking back, I would say my urinary problems which started in the 1980s were an example of PIRA (progression independent of relapse activity) because the urinary problem has been with me for 30 years gradually worsening and is not relapse related.

In the decade following my first MS symptoms I had two other problems. One was double vision, which got better over about a month, a classic relapse. The other problem was leg spasms which gradually came on and have never gone away, only got worse. I would say my leg spasms like urinary problems are another example of PIRA, with the MS disease process just smouldering away.

Smouldering disease

In a paper published in 2022 titled, “Smouldering multiple sclerosis: the real MS.” Professor Gavin Giovannoni said, “The ‘real MS’ is driven primarily by a smouldering pathological disease process. In addition, the progressive accumulation of disability in MS can occur independently of relapse activity from early in the disease course.”

Another recent example of the belief that progression is independent of relapses was seen in an academic paper presented at the recent 2023 European MS experts (ECTRIMS) meeting in Milan, Italy.  The paper titled, “Association of Early Progression Independent of Relapse Activity (PIRA) With Long-term Disability After a First Demyelinating Event in Multiple Sclerosis,” focused on PIRA. It said that in most MS cases progression is not a phase that follows relapsing MS but is there right from the start, running alongside relapses. The researchers found that more than half of MS patients like me experience PIRA early in the course of their disease.

The reason this matters, is that while MS is regarded as an inflammatory disease of the central nervous system driven by autoimmunity, it is easy to parcel it up with the other auto-immune diseases, with whom it does share several similarities. If ‘smouldering MS’ is the real MS, as Prof Giovannoni suggests, it means MS is something of an outlier because it is primarily a neurodegenerative disease and it is hard to find other similar neurodegenerative diseases which can ‘smoulder’ for decades, gradually getting worse.

Leprosy similarity

Strangely, and you will be surprised when I say this, the other neurological disease that fits neatly into this ‘smouldering’ category is leprosy, an infectious disorder affecting the peripheral rather than the central nervous system. And if you think this comparison is as crazy as the proverbial box of frogs then I invite you to read one of Professor Giovannoni’s MS selfie blogs called, ‘Will the real MS say hello?’ In the blog Prof Giovannoni says, ‘Multiple sclerosis can be viewed as an inflammatory neurodegenerative disease with the clinical spectrum or phenotype determined by the presence or absence of focal inflammation, similar to that which occurs in infectious diseases, e.g. leprosy.”

Obviously, MS is not in any other way connected with leprosy but Prof. Giovannoni’s comparison is valid because other chronic demyelinating diseases are caused by infection, not just MS. I believe that an infection set off my MS, and I am certain it was the Epstein-Barr virus (EBV), also known as glandular fever, and clearly not infection with mycobacterium leprae, the bacterium that causes leprosy.

A different approach

Sometimes, I think, it’s good to think outside the box as Prof Giovannoni has done. Even if this box of ideas sounds as crazy as the proverbial box of frogs it does serve us MSers well as it leads to viewing MS as an inflammatory neurodegenerative condition rather than an auto-immune disease. And that does us all a service.

Recognising ‘the real MS’, as Prof Giovannoni puts it, is the first step on the  long road to finding a cure for it, something we have so far failed to do in the 150 years since MS was first identified.

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Ian also hosts our podcast, Let’s Talk MS, talking about everything from naturopathy and mindfulness to medical cannabis to off-label treatments for multiple sclerosis. Why not have a listen?