So long story short, I’ve had a range of neurological symptoms for a while now that come and go with new symptoms sometimes appearing. Very much the pattern you expect to see in RRMS. Multiple GPs and a rheumatologist have told me my symptoms are definitely neurological in nature. I saw a neurologist last year who agreed with this, ordered an MRI and told me I’d have a follow up regardless of what it showed. I hear nothing back for a while, contact my GP who finds out that they’ve discharged me with notes that don’t match my symptoms at all. They said I need to see a dentist, not a neurologist, about my jaw pain which isn’t something I’ve ever complained about. I don’t have pain in my jaw. GP has referred me back to neurology for a second opinion as they wouldn’t reopen my case.
In the meantime, as the notes from the neurologist were complete nonsense and as I was curious, I requested a copy of my MRI and the radiologists report. The report says there’s absolutely no lesions anywhere and that it’s all completely normal healthy tissue. Except it’s not, now I know I’m not qualified to read an MRI but there is undoubtedly lesions showing on my MRI. They’re small and I know lesions can be caused by other things including age but they’re definitely there and have not been mentioned in the radiologists report.
My question is, does anyone have experience of lesions being completely missed on an MRI but later going on to get a diagnosis, or at least an acknowledgement that there are lesions present? Also, has anyone had a diagnosis with only small lesions present? Researching online all the example MRIs show pretty large lesions but there are research papers that talk about 2 mm lesions. I’d say the ones I can see on my scan average around 3-4 mm.
Hi Joe, oh my, what a to do indeed!
It’sobvious your notes have been mixed up with somone else’s.That other person must have been told they have your issues!
My experience of late diagnosis…22 years!.. and missed lesions caused untold distress.
I attended 4 local hospitals and was told, although I had typical and very disabling PPMS symptoms, they couldnt diagnose.
A few years later, i was told I had HSP and that carried a 50% chance of being passed to my offspring. I felt really upset by that.
But genetic testing disproved that bombshell! Again, no diagnosis was given.
I finally took myself right out of the area, to a specialist neuro hospital in Liverpool and hey presto…an expert neuro did a whole barrage of tests and found 2…just 2 lesions on my cervical and thoracic spinal cord.
Just 2 lesions have taken my legs, bladder, bowel and are now taking my left hand and arm functions.
And that’s it!
Boudsx
Oh wow PBMS, that is quite the journey. Thanks for sharing.
I don’t think my notes got totally switched as there was some things on them that I had mentioned. The consultant wrote nothing down whatsoever during the appointment so I always thought he wrote up the notes later and misremembered or confused me with another patient and things got mixed up that way. My GP wrote to them saying that there seemed to be a mistake, they were adamant there was no mistake and kept referring to my non existent jaw pain. Weird.
I did look up the neuroradiogist who signed off the MRI report and they’re a stroke expert rather than MS. I have read a lot of stories about non MS doctors completely missing signs of MS. The MRI of my cervical spine is part that makes me most confident, I’ve found example images where the lesions are more faint than what I can see on mine. I plan to bring some of the images with me whenever I get a second opinion appointment. If they look and still think it’s nothing or that it can be explained by something else then atleast I know they’ve seen what, to me, looks like lesions. I have no idea if the neurologist before looked at the scans, presumably they only read the report as it said there was no sign of anything anywhere.
I had two MRIs, 9 months apart. Both showed MS lesions. However, after the second one, I was referred to Nuerosurgery Oncology (yes, I pooped my pants at this point), because they found a meningioma. I only found out all of this by a letter, the one that is a copy of the one sent to and addressed to your doctor.
Went to the appointment with said specialist and they told me that it had been present on my first MRI, but hadn’t been noted.
So yes, things can get missed. GP’s are human after all.
Jx