I am teaching on one of our MS Preceptorships this week and several of the pwMS, who kindly volunteered to share their stories, told the attendees that it took more than a decade for their MS to be diagnosed. This is not unusual. In a pan-European survey, performed by the EMSP (European MS Platform) on a large number of European people with MS, it took more than 1 year from symptom onset to be diagnosed with MS in the majority of respondents (>70%). The average time to diagnosis was over 8 years (slide 26 below). Why? Is it access to doctors? Is it denial, i.e. a reluctance to seek medical attention with minor neurological symptoms? It is the failure of the GP, or family doctor, to interpret subtle neurological symptoms and refer patients to a neurologist? Is is the misinterpretation of symptoms and referral of the patient to the wrong HCP, for example to an orthopaedic surgeon or a neurosurgeon? Is it delayed referral from the general neurologist to the MSologist? Is it poor access to MRI, and other diagnostic tests?
If we continue to make the case that ‘Time Matters in MS’ then we at some point in time we are going to have to try and reduce the time to diagnosis. Any delay in time to diagnosis means a delay in treating MS, with or without a DMT or other treatments. The latter treatments include symptomatic treatments, physical therapies, treatments for comorbidities, and lifestyle and wellness interventions.
Can you please let us know if your diagnosis was delayed and what the cause of the delay was?
When you say date of diagnosis do you mean diagnosis of CIS/possible MS or definite MS? I had my first severe relapse and saw the GP, I wasn't referred to the hospital. Then I had my second very severe relapse 3 months later. This time I was referred to the hospital with several delays. I had my MRI scan, lots of lesions and then many more severe symptoms. I was diagnosed with possible MS when I really should of been diagnosed with definite MS. My diagnosis experience was awful, the GP didn't recognise severe MS symptoms. Then the hospital neurology team lacked knowledge and experience of MS. I could write a book on it.
CIS (possible MS) or MS. It is having the first link with MS is that we are after. Thanks.
Thanks. I didn't get offered DMT's with the possible MS diagnosis, DMT's were not discussed. Even though I had very severe symptoms. I wish I'd got a second opinion at a different hospital. I was very naïve.
Same with me
I wonder how many people with PPMS recognise attacks at an earlier time point.
I have PPMS and never had an 'attack'. It just started affecting my walking and got worse from there. I was only 26.
Likewise. I had one flare at ~23 from which I never fully recovered; had slow, slow worsening of mobility from then on.
I remember a number of visits to GP's over the decades but the earliest I believe was reporting nerve pain in my big toe. I was told 'Ignore any pain that doesn't last long', and that is what I did. It's not much for GP's to go on at that point. Though later when I reported excrutiating face pain, exhaustion and weak legs and the GP shugged her shoulders and said 'I don't know' she could have thought about it a bit more. We can see it in hindsight but because we are all different it must be a hellish job spotting it in the early days, escpecially when it hasn't developed enough to show on a scan.
If you've got a symptom, chances are you'll see lesions, given that 90% of lesions are asymptommaric.
MRI can't pick them all up yet. My first scan showed nothing but I had symptoms. I could be wrong but I think lesions need to be 4mm to be seen.
My first neurologist meeting was in 1991 when I presented with l'hermittes – all tests were negative MRI, evoked potential and LP. Then nothing until 2005 and had numbness in both arms. Another MRI but nothing seen, 2008 another attack asked to see neuro and have an MRI I told GP I suspected MS. He told me as my scan in 2005 was clear it was not MS and a viral attack. I recovered but then a year later the a foot started to drag. Saw neuro in 2011 and after LP and MRI I was dx with delayed radiation myelopathy. 2 years later a differed neuro said I had suffered from TM. Then I went and saw another neuro privately and got the RRMS dx and advised to go on tecdifera. Back home I was told "if it is MS" then it is only benign and I dont satisfy NICE criteria for a DMD. Just had HSCT in Mexico because I could not get a DMD. Feeling improvements already.
Question I've always wondered, is a relapse usually one single lesion or can several occur simultaneously? I know one of the diagnostic criteria is lesions 'diseminated in space and time' but if many lesions show up on MRI how do you know when they formed? (Assuming no Gd used). I remember meeting someone with MS just after I was diagnosed who asked where my lesion was. I'd only had cervical and thoracic spine imaged and there were 'at least 12 discrete lesions' Little known fact that radiologists can only count to 12 😉
Prof G, are you targeting 'Time Matters in MS' to neuropsychiatry services too? The medics I've spoken to in neuropsychiatry in the UK are not aware of it's importance. The few I've spoken with just assume as some pwMS have experienced long delays with MS diagnosis there is no need to treat sooner rather than later. The hospitals and universities that offer neuropsychiatry services and training need to be made aware of 'Time Matters in MS'!
Thank you for a continuous outstanding work. Optometrists should have more training about common manifestations of MS in the eyes, specially in young people. A couple years ago my Portuguese MSlogist has coordinated a very welcomed MS training programme to raise awareness among GPs. Perhaps it could be beneficial to extend these kind of programmes also to Optometrists.
Tambem sou portugues …Donde é?