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Diagnosis Questions

Hello,

A few weeks ago my husband was diagnosed with MS based on a MRI alone. He had a MRI for a different reason (herniated disc which he’s having surgery on) and they noticed 3 lesions in his spine. So they did a brain MRI and noticed a few more lesions and diagnosed MS on the spot. He’s never had any symptoms. He never really gets more than even a cold. We plan to get a second opinion to verify his diagnosis. Has anyone else been diagnosed based on lesions alone? Just complete shock to us.

hi

i was diagnosed on the basis of one MRI although had lumbar puncture to confirm it.

the reason i was given an mri is that i had loads of symptoms and a history going back to my early teens of weird stuff happening.

as long as he has no symptoms he should be able to continue his normal life.

at least you will both be aware of what to look out for.

usually when diagnosed you are put in touch with an ms nurse and offered a Disease Modifying Drug (DMD).

maybe ask about these.

carole x

Crumbs - that’s a shocker.

I was dx in a more traditional way, on the basis of clinical exam + history + MRI (which matched what the neuro expected to see) and then an LP for certainty (which matched everything else.)

For all I know, it isn’t unusual for asymptomatic MS to be picked up by a happenstance scan, but it certainly isn’t typical. What a bolt from the blue! Poor you and poor him.

I think a second opinion is a very good idea. If possible, make sure that he sees a Consultant Neurologist who is an MS specialist (as you may already know, not all of them are). This might be difficult if the diagnosing neurologist is the only MS specialist within a 100 mile radius, but at least you can explore your options. Your GP should be able to advise on who’s who in your area.

Alison

Yes, an absolute shocker. I was diagnosed in a much more traditional way, based on symptoms as well as test results.

What you (he) could do is ask for more tests, for example, lumbar puncture or evoked potentials. Something like 80 to 95% of people with MS test positive for Oligoclonal bands in the cerebrospinal fluid. An LP isn’t a pleasant test but it’s more evidence to add to the MRI tests. Have a look at https://www.mstrust.org.uk/a-z/diagnosis The MS Trust has many information pages which are also available as printed booklets, so there might well be more there than just information about diagnosis which will help.

And of course, it maybe that you both need to talk more with the neurologist, to establish exactly how confident s/he is of the diagnosis based on the evidence they’ve seen. Also, whether a disease modifying drug is appropriate for your husband. He may never have had any symptoms, but sometimes prevention is still a good idea. It will perhaps depend on the MRI evidence, ie, where the lesions are and what that might mean in the long term with regards to disease activity.

All the best.

Sue