Hi there everyone, I would be grateful for any words of wisdom! I had my MRI yesterday (brain-no contrast) Earlier in the day I had an appointment with my dr (at his request) who wanted to talk about the MRI, symptoms, how I was coping etc and where we go next. The short version is that if nothing shows up they’re not sure where to go next, it will probably be a case of managing symptoms rather than looking for another cause! Has anyone ever been in this position? They seem confident that it is ms…but what if nothing shows up? I know I have no idea what’s on the scan! And it feels silly to say I’m more afraid of nothing showing! Many thanks in advance!
What other tests have you already had (if any)? It’s very rare for any conclusion (positive or negative) to be reached solely on the basis of MRI. Usually you would need a whole raft of blood tests to rule out other things (this even if the MRI showed pretty “classic” evidence of MS).
You would also commonly be referred for a test called “Visual Evoked Potentials” and often a lumbar puncture (I was diagnosed without the latter, but they still nearly always ask for it).
If you haven’t already had these, they’re likely to be on the list to be done at some time, as I’ve never heard of anyone being diagnosed without at least the blood tests, which are essential to rule out other possible causes.
I would try not to jump the gun about: “What happens IF?”
If nothing shows on the scan, it is less likely to be MS, which you may be able to take some comfort from, although it cannot rule it out completely. Occasionally, people do have symptoms before anything is detectable on a standard MRI, but in general, the longer symptoms persist, the less likely damage would remain invisible to MRI.
Some Rheumatology spectrum disorders can have neurological symptoms, so if Neurology draws a blank, it might be that your next port of call is Rheumatology. I was the other way round: started at Rheumatology, who found nothing - discharged me with advice to rest and take Ibuprofen!
Some four or five years later, I ended up at Neurology, who twigged what the problem was almost at once - although it still took about another eight months to be formally diagnosed. So some of it’s down to luck whether you end up in the right camp first go or not.
Had every blood test under the sun last year when admitted to hospital! First neurologist said mg (myasthenia gravis) started treatment but tests came back negative! Symptoms eased except fatigue for around 3-4 months then started up with new ones added in for good measure this is when neurologist started down the ms route! It has eased again, left with fatigue, numbness in right hand, slight foot drop (not as bad as it was…more a scrape along the floor) Thanks for your reply
Numb hand and foot drop would have me wanting to order spinal MRI scans if I were a neuro (which I’m not). Have you had them? There is quite a large % of people with MS who have only spinal lesions - it could be that you fall into this category. As Tina already said, it is also possible to have no lesions visible on MRI and still have MS. A good MS specialist will diagnose MS without MRI evidence if other tests are consistent and alternative causes have been ruled out. If your neuro is a good one and is confident it is NOT MS, then he/she should be considering rarer causes of neurological symptoms (eg genetic conditions, metabolic conditions, neuromuscular conditions). It could be that you need to be referred elsewhere to have other specialists give opinions and, as there aren’t many neuros who specialise in rare conditions, you may have to do a bit of travelling. One thing you might push for is MRI on a 3T scanner - the neuro should know of one. Stronger scanners pick up many more lesions than the standard 1.5T scanners found in almost all hospitals, especially if they are set to use thin slices (2-3mm). And I’ve just realised that you haven’t had your scan results yet! Hopefully it will be conclusive and you will be able to ignore all of the above Karen x
Thanks so much for your kind replies! I guess it’s just a waiting game! Ex