late onset (LOMS) with clean MRIs?

New diagnosis and before diagnosis
1

There seems to be some debate about whether all LOMS are actually late diagnosis MS.

A US specialist told me last week that " when I diagnose MS late (in 50s or 60s), when I look at imaging I see that patients must have had the disease for decades." “you can tell from the amount of lesions and the level of brain atrophy.” (She seems to believe that in all cases MS has actually started in late youth/early adult years.)

I wondered if anyone had ever seen an example of LOMS presenting initially with clean MRIs?

Many thanks

2

Hi John
That’s the trouble - most people won’t have an MRI history prior to being investigated for MS.

I’m one of those people. 59, and (I’m told…) PPMS. Definitely for 6-8 years but was misdiagnosed with something else and didn’t get a head scan until 18 months ago - so no prior history. Smouldering too - no evidence of new lesions from one MRI to the next though symptoms are worsening.

Are you in the same boat?

Have you read Prof G’s blogs/posts?
Graeme

1 Like
3

Thanks Graeme.

It sounds like your MRI 18 months ago showed signs of preexisting lesions.

I’m 61. I’ve been experiencing MS-type fatigue for 18 months and some other MS-type symptoms. My sister is RRMS.
My VEP and OCT scores were “equivocal” i.e. away from normal, but not at some MS levels.

But both my brain and spine MRIs show no MS-type lesions.

Yes Gavin Gs smouldering MS explanation would allow for MS disease progression without inflammatory activity in theory; I’m interested if there are real life case studies of this happening.

Thanks

4

I’d never heard of late-onset MS before, but I want to say that I had clear MRI’s in 2007, 2012, and 2017. It wasn’t until late 2019 that an MRI showed both old and new lesions and finally gave me a diagnosis. I hadn’t had a noticeable relapse since before the 2017 one. My evoked potentials were clear in both 2007 and 2019.

5

many thanks NorasMom.

apologies if I’m not understanding you well; please could I clarify;
are you saying that you think you had lesions in 2017 and earlier, but that the MRIs at those times did not pick them up?
or that lesions started after the 2017 MRI but were already old by the time of your 2019 MRI?

and please could I ask if you fit the LOMS age range (>50 at diagnosis)?

Many thanks, and every best wish as you live with MS.

6

Hi, who is Prof G please?

7

About Prof G

https://sites.google.com/giovannoni.net/clinicspeak-dmt/home and https://gavingiovannoni.substack.com/