Late onset MS; does it change the way we think about MS? #ClinicSpeak #MSBlog #MSResearch
“I am often asked how commonly does MS present in older people. The study below shows that 3.4% of MSers present after the age of 50 with their initial symptoms. In contrast to the established clinical dogma the study below only found 20% of MSers, with so called late-onset MS (LOMS), had primary progressive disease. I have always assumed this figure to be much higher than this. This is good news in that we can offer most of the LOMSers treatment with DMTs as they have relapse-onset disease. I note that a significant number of LOMS PPMSers were reclassified as having SPMS, based on a history of earlier events suggesting a relapse. This is quite a common phenomenon; you make a diagnosis of PPMS and then when you interrogate the MSer you uncover a distant history of a so called sentinel event suggestive of an initial attack. In one patient under the care of Professor Ian McDonald, who I saw many years ago, presented in his early 70s with progressive MS; when I reviewed his history he had had an episode of blurred vision in his early 20s compatible with optic neuritis. He did not have PPMS, but so called single-attack progressive MS (SAP), which we now classify as SPMS.”
“What all this tells us is that the clinical classification of MS is far from a science and is more an art and an very inaccurate art at that. What we really need to know does this patient have MS and if they do is there any evidence of ongoing focal inflammatory events (new lesions on MRI or actively enhancing lesions). MSers with active disease are likely to respond to anti-inflammatory therapies. In comparison MSers with no ongoing focal active inflammation, but who are progressing clinically or on MRI (accelerated brain atrophy), need to be offered recruitment into clinical trials to see if they respond to therapies targeting, in my opinion, inflammation, neuroprotection and possibly remyelination (see therapeutic pyramid below).”
Roohani et al. Late onset multiple sclerosis: Is it really late onset? Mult Scler Relat Disord. 2014 ;3(4):444-9.
BACKGROUND: Multiple sclerosis (MS) is the most common demyelinating disease, and onset over the age of 50 years is referred to as late onset MS (LOMS). It has been thought that LOMSers will be more likely to exhibit a primary progressive (PPMS) clinical course.
OBJECTIVE: To identify the clinical characteristics of demyelinating disease in patients over the age of 50 years from four different MS centres in the Northern Midwest USA.
METHODS: We reviewed medical records of all MSers seen at the MS centres and identified those who were 50 years of age or more at the time of first spontaneously reported symptoms. We included those who were diagnosed with MS or clinically isolated syndrome (CIS) and excluded MS mimickers. Demographics, initial clinical course diagnosis, clinical characteristics, and any available five-year follow up data were collected. The clinical course was re-evaluated in each MSer with careful questioning regarding any prior focal neurological symptoms that had persisted for at least 48h, not otherwise explained. Those with a prior event who were initially diagnosed with PPMS or CIS were reclassified as secondary-progressive MS (SPMS) and relapsing-remitting MS (RRMS) respectively.
RESULTS: We identified 124 MSers from a total of 3700 patients, making LOMS 3.4% MS in our population. The initial clinical course was RRMS in 50 (40%), PPMS in 44 (36%), SPMS in 15 (12%), and CIS in 15 (12%) patients. After reclassification the clinical course was RRMS in 55 (44%), PPMS in 25 (20%), SPMS in 34 (28%), and CIS in 10 (8%) of patients. The clinical syndrome was identified as acute for 77 MSers (62%) with transverse myelitis (N=25, 32%) as the most common type. The clinical syndrome was chronic for 47 MSers (37%) and again transverse myelitis (N=24, 51%) was the most common type. Five-year follow up data was available for 44% of these MSers.
DISCUSSION: LOMS is rare and RRMS is the most common clinical course. Reclassification of the clinical course, not done before in any other LOMS study, with careful questioning regarding a prior neurological event reveals that SPMS is the most common type of progressive MS and PPMS may be less common than previously thought. Transverse myelitis is the most common clinical presentation.
This rings true of a family member who had one relapse a few years ago – which led to MS diagnosis in late 50s (as 'benign MS, gah, no such thing!), but upon interrogation, it seems that 'mini strokes' she'd had 25 years before were probably MS-related. MRI and neurologist back then wasn't able/didn't diagnose MS. But despite this, since diagnosis, no DMTs have been offered as a treatment to her by her neurologist (quoted that as per NICE criteria, she hasn't got active enough disease on relapses to be eligible for treatment). So, she's been left, treatment naive, with her disease likely progressing sub-clinically. No MRIs have been offered since diagnosis, so we're unsure of any changes in lesions, but because she's not had another relapse, then she's not getting a DMT. MS is such a unique disease and these late-onset patients seem to be, and have been, missing out on potential therapy. It makes me cross!
People weren't always given a diagnosis in the '70s. it was more of a wait and see attitude. I guessed I had MS, I believe whether right or wrong that it was thought if there was only one attack, it would be detrimental to psychological well being. I was told not to tell other patients what was wrong with me. There were no treatments, so somehow it's not so shocking.
This is not beneficial news for PPMS sufferers as it may mean that more neurologists argue that patients have SPMS but were unaware of it until progression happened. PPMS is already a seriously minority ailment and could be even more marginalised.
As an LOMSer (age 54) I must say the key word here is 'reported' symptoms. It's not that I didn't have questionable episodes of various MS-like symptoms, but nothing made me stop in my tracks and require medical attention. Instead, I believe many of us LOMSers would say, oh yeah, looking back I remember when … and then fill in more of our history with MS. This is especially true with women with young children and a family who tend to power on through feeling bad to take care of everyone else. Just my very unscientific observation from talking with other LOMSers, and there seem to be a lot of us around these days considering this is thought to be a young person's disease.
I absolutely agree with these comments. I find that often symptoms can be overlooked by an individual as they struggle on with a busy lifestyle and then they either "crash" or when life gets less hectic and family leave home they start to question general health issues.I have just had a back operation to relieve a disc prolapse despite my suspicions that myelitis and trigeminal type neuralgia pointed to MS. Unfortunately I am still without diagnosis and waiting results but looking back I recall several episodes of vague puzzling symptoms, ignored at the time and probably not enough to suggest MS. A busy lifestyle can lead one to block off the warning signs.Then if there is late onset of severe symptoms clinicians find diagnosis difficult as there is no previous history and often no findings on MRI. Consequently anxiety is often ruled to be a factor and an individual is left distressed until further developements. MS is such a complex disease and very unscientific in nature. These are just some comments from someone new to MS, suspecting LOMS, with fairly dramatic symptoms but as yet only self diagnosis.
It's the same if you were diagnosed at a young age. I threw myself into my career, making no comment to my neurologist about the problems I was having. One day I mentioned my spasms after years of suffering and my neuro said "I can give you something for that". Didn't really think about after 30 years there was anything or that spasms were part of MS. Ignorant? Yes, but a little bit wiser.
HiIm in my early 60's and had my first lot of vague symptoms early and ongoing 2016 (Urgeny small volumes, blurred vision 3 months, inability to swallow Tuna in spring water, fecal fluid leakage) then had an obvious set of symptoms late 2016, patches on tingling heaviness and altered sensation left arm, blurred vision and aching eyes 2 – 3 months, severe cramps in calves and thighs on laying down approx 3 months, loss of strength, grip and floppy right hand, severe vertigo. loss of balance kept tripping on nothing etc. a year later eventually saw 2 different Neurologists and based ONLY on my MRI which showed no frontal lesions told me I did NOT have MS. Didnt offer any other suggestion. The other Neurologist told me it probably was MS and I did have a transverse spinal lesion which he said was likely to be Transverse and MS. All symptoms except swallowing difficulty which has got worse and heaviness on and off left arm, have gotten better. Do ALL MS diagnosis rtely on FRONTAL lesions in MRI?