I have 3 non specific lesions picked up on an MRI 18 months ago. Since then my scans have stayed the same. I had evoked potentials dome showing slowing to my legs. I also have trigeminal neuropathy attributed likely due to the position of one of my lesions. I have had 2 attacks on the legs, one when the EPs were done affecting both sides, and I now have a extensor spasm on my left leg - it has not been possible to bend it more than 45° for 4 weeks now. My MS consultant says he has not diagnosed me with MS as the lesions are non specific and are not the sort of size or shape he would expect for MS. Has anyone been diagnosed under the new McDonald criteria with this sort of symptom and clinical base? I was wondering what the red lines are (so to speak) that I would need to cross to be diagnosed as MS or something else. If my lesions and any future ones remain nonspecific but my symptoms in my leg and TN mouth continue how can I slow it down without meds? I am worried this beast will keep causing havoc if I never get diagnosed specicially because my clinical proof fits no illness accurately. Thank you for reading my blurb!.. just adding that I have been tested for everything under the Sun and all has been negative.
You say you’ve been tested for everything under the sun… I’m assuming therefore, that you’ve had a lumber puncture? Visual evoked potential? Spinal mri? Nerve conduction tests? Electromyography tests? If all was negative I’d say it’s a safe bet that ms is not the issue. Sometimes there is no reason to be found for odd neurological happenings. Non specific essentially means that your lesions cannot be attributed to a specific cause. How baffling and annoying for you. Certainly seems you are a fair way off meeting the criteria for an MS diagnosis. Keep on at your neurologist. If they are concerned your issues are ms related, make sure they’ve given all available tests if they haven’t done so already. If they say no, ask in that case if you are to shine then that MS is not the cause…
Shine = assume. It’s late and predictive text is stupidly annoying!!!
Hi Cherry Tree, thank you for this. My eye VEPs were borderline on my left eye, my leg SSEPS were slow. I am having another Mri and lumbar in the next week with a repeat of sseps (18 months since the last) and the nerve needle test you mention that I have not had before. I am interested that you say I am very far away from a diagnosis when I have had 2 events and Trigeminal neuropathy. However, I am learning very fast that MS is terribly difficult to diagnose so I totally get that bit my MS consultant said to me that diagnosis could be made with no lesions - I had not heard that before and seems to go against the diagnostic criteria.
I find the statement of your neurologist that MS could be diagnosed with no lesions a bit nonsensical.
As you’ve seen yourself, the McDonald Criteria uses demyelinating lesions rather than any other test results to diagnose MS (for anyone reading this unfamiliar, see https://www.mstrust.org.uk/a-z/mcdonald-criteria ) But do keep in mind, the lesions should be ‘typical of MS’. This means in places and of types that indicate MS.
It’s a horrible fact that a few people are diagnosed with MS very, very quickly (a terrible shock to many), whilst others find a diagnosis takes months if not years. So yes, it can be a very difficult diagnosis. And living with the spectre looming over you is not at all comfortable.
I suggest you might be closer to answers after the next MRI scan and the LP. Either MS will be completely ruled in or out. Meanwhile, if you’ve not done this already, start keeping a diary of symptoms.
Best of luck with your next round of tests. Let us know what happens.
Thank you Sue. Yes, I don’t get the no lesions comment - the consultant is an MS specialist too. I guess my question was largely querying this and whether a non specific lesion could be attributed to MS. It’s good to get input on here when I’m at a loss! So, here we go for a few more tests wish me luck!!