Ravn
Senior Member (Voting Rights)
My first MRI was more than 20 years ago in one of the early model scanners; my latest was in a brand-new, latest of the latest model machine. So image quality would have been different.So you had some lesions show up on your first MRI but none or no change on a subsequent one? There have been a few members say that they had lesions show up on an MRI done soon after onset but that subsequent MRIs showed nothing. Not many people actually manage to get an MRI soon after onset.
Still, both MRIs showed much the same thing: a large lesion on the spinal cord and a few white spots on the brain. Due to the technology differences they couldn't tell if those brain spots were in exactly the same location. There definitely hasn't been any progression over more than 20 years and the lesions didn't look 'active' whatever that means.
The latest official explanation for the spinal lesion is that I must have had an episode of Transverse Myelitis at some point. Transverse Myelitis, incidentally, can be caused by various viruses including the usual suspects in ME.
The latest official explanation for the spots on the brain is that they probably mean nothing, sometimes healthy people have a few spots apparently. I do wonder though if they could also be ME related, after all there've been ME studies that have found spots similar to those found in MS. Unfortunately I don't know the regions my spots were found in and whether they match those ME studies.
I now consider the MS misdiagnosis to have been the best thing that could have happened to me at the time. I was ill and I was given a diagnosis everybody took very seriously. There was a lot of support even though there wasn't any treatment back then. By the time drugs became available in NZ I was in my almost-remission period. Therefore all the 'treatment' I ever got was a contact phone number for the local MS society and a single visit from an occupational therapist who told me about ways to conserve energy and advised to listen to my body and rest when I needed to - inadvertently she gave me the best possible advise for ME!So, it seems that you had a false positive. Would you have rather not had the first MRI?
Of course it's impossible to be 100% sure of anything but I'm as certain as can be that ME is a better fit for me than MS because:How can you be sure that you have ME/CFS rather than MS that hasn't progressed?
One, my scans showed zero progression of anything, and no sign of a flare-up in lesions despite my symptoms most definitely having flared - all symptoms that is except the neurological deficit which has stayed exactly the same (so is likely just the leftover damage from the suspected Transverse Myelitis).
Two, I learned - rather belatedly, 20 years after the event, when discussing my latest scan - that my original MS diagnosis had been doubted by two other consultants at the time.
Three, my ME diagnosis was made by Ros Vallings based on ICC criteria.
Four, in hindsight I realised I had had PEM episodes right through my almost-remission. Every month or two I'd get what I thought was a virus coming on - sore throat, feeling a bit under the weather, etc. - so I'd take it easy as advised by the OT and it'd go away after a couple of days without me ever needing to get out a single tissue to blow my nose. And it always happened the day after a particularly big exertion... sound familiar?
I didn't really get much care for either illness, mainly because there wasn't much available for MS 20-odd years ago, though I did get that OT visit. And as we all know there isn't that much available for ME today. There was one doctor who informed me regretfully that the only things on offer for ME were CBT and GET - and neither was available where I live. He was rather taken aback by my emphatic reaction of "Good! Then we won't have to argue about that."And just as a side question, did the care you got after the MS diagnosis differ from what you got after being given the diagnosis of ME/CFS?
There was a big difference in attitude as soon as the MS diagnosis was reversed. Overnight my behaviour and symptoms - completely unchanged - were reinterpreted as variations on the theme of anxiety, which was surreal because as a Don't-worry-she'll-be-right-type I'm usually accused of not showing enough concern. I didn't know about the baggage ME carries back then, so was thoroughly baffled by this sudden 'discovery' of my non-existent anxiety.