Hi, been reading all your posts for a while now which has been really useful but this is my first post. Guess im fully wandering around ms limbo land! had what seems to have been first major relapse in apr may with loads of symptoms, tingling in hands feet that progressed to whole arms legs, very stiff neck, extreme fatigue, urine retention, tightness round ribs, word problems, some blurred vision but eye sight been bit dodgy for years. Went to gp straight away as knew something was up, saw 5 drs in space of 2 weeks before taken seriously as relexes were brisk and referred to neuro, seemed fast but things going a lot slower now. Had mri in may, lesions found in brain suspicious of demylination and lp in june with oglicinal? bands found. Found this out via gp but still waiting for appt with ms neuro for diagnosis so my question is, has anyone had lesions found in mri and bands on lp and NOT had diagnosis of ms or been diagnosed with something else? Thanks for reading and all thoughts appreciated.
Your situation is extremely common, and I would almost say a normal part of being diagnosed with MS (or not, as it may turn out).
The thing with MS is you can’t be diagnosed on the basis of a single episode, however classic the evidence. It has to be certain it’s multiple - which means either ongoing, or has happened more than once.
For reasons that are not well understood, some people have a single episode, that looks, in all other respects, like MS, but never go on to have another one. So diagnosis can’t be confirmed unless or until anything else happens - usually new symptoms, or evidence of new damage on MRI, or both.
If nothing ever does happen, it will just lie on the file in case anything ever did - it might be called clinically isolated syndrome (CIS), possible MS, or even probable MS.
But it can’t be definite MS until it’s clear it wasn’t a one-off.
As there can be months or sometimes even years between successive relapses, this can leave people in a maybe/maybe not situation for a long time. If you were to have another relapse imminently, diagnosis would probably quickly follow.
But if you don’t, they will probably keep you on the books “in case”, and ask you to report any new symptoms. They may also suggest a repeat MRI scan in a few months, in case of any changes that did not have accompanying symptoms.
I was diagnosed the latter way - I could not personally feel any new disease activity, but MRI showed there had been.
Unfortunately, after a single incident, you will always have the spectre that it might turn into MS one day. But it also might not, and forever remain just “one of those things”.
No reflection on your personal credibility, but patient accounts of having been ill before the episode - perhaps for years - might fuel neuro suspicions, but because they weren’t clinically verified, they can’t be used as evidence for diagnosis.
I knew I’d had previous relapses that were never investigated - mainly because I’d never been to the doctor about them, but on at least one occasion because the doctor had thought I was time-wasting, and sent me home with a bit of a ticking-off. There’s no question that my neuro did believe me about these earlier incidents, but they couldn’t help him diagnose 'til he’d seen new activity with his own eyes - otherwise it just counted as “anecdotal” - regardless that he did believe me.
Hope this helps.
Thanks tina, sounds good if there’s still chance to be off the hook. Interesting to hear about ur previous episodes still being considered anecdotal because of course im going through everything that’s ever happened to me trying to decide if I’ve had previous symptoms. Just need to sit tight abdominal wait it out. Thanks, F
Yes, it still might never amount to MS, if you’re lucky!
Do tell the neuro, though, if you believe there have been previous episodes that weren’t seen by a doctor. Even though he can’t use them towards an official diagnosis, it will help to improve his picture of what’s been happening, and his assessment of how likely it is that this would ever turn into MS.
Interestingly, although my neuro could not take my word for it as evidence for diagnosis, once I was diagnosed, he did have a more relaxed attitude about accepting self-reports to determine whether I was eligible for treatment.
They look at how often you’ve been having relapses, and he was perfectly OK about accepting what I said had happened when, without me having to prove I’d seen a doctor about it or anything.