Last year I was diagnosed with radiologically isolated syndrome. My problems at the time were fatigue, chest tightness, and pain/pins & needles in right foot/lower leg.
Brain MRI showed quite a few very small, non-specific lesions, and also one larger lesion typical of demyelination. Second brain MRI later showed possible, but not definite changes. MRI of upper spine was clear (consultant thought it wasn’t necessary to scan lower spine). He felt that the brain lesions, whilst ‘suspicious’ of MS, could just be incidental findings, and not linked to the symptoms I’d reported. He said he though radiologically isolated syndrome was the ‘safest’ diagnosis, but also said there was between 30-70% chance it could turn out to be MS over next 5 years.
I discharged myself from neurology, and neuro said he thought this was a good idea and fully supported it. He said a lot of patients in my situation would ask for follow up scans, and whilst he would do them if I wanted, he thought it wasn’t the best approach from a psychological perspective - his advice was to get on with life as best you can, without focusing too much on the possibility of MS - because if it was MS, it would show through future symptoms, and he’d be happy to reassess me if that happened. Also a mix up of scan results (his error, for which he appologised) had left me quite stressed, so I really needed space from it all.
However, in March this year I developed sudden tinnitus (both ears, left worst), along with dizzyness (not vertigo) and fatigue. Didn’t go to GP straight away, as wanted to see if it was a virus. After a month, I went to GP - who referred me to ENT, and also re-referred to neurology. ENT tests showed mild hearing loss (at 2,3 and 4khz) . Consultant said this could be noise induced, but since that wouldn’t account for the dizzyness, he said he had to be honest with me that he though the diagnosis lay elsewhere, and that he would encourage me to go back to neurology (he sent letter to this effect to my GP). However, I’ve read that although dizzyness is common in MS, hearing loss isn’t terribly common. I think my symptoms could be consistent with menierres disease, and am a bit concerned ENT consultant may have missed it because he got sidetracked by my previous history.
My neurology apt is sept. I presume another mri will be ordered, but last time that took a few months - so likely won’t know anything more till november time.
My worries are:
i don’t notice the hearing loss at all, and I’ve adjusted to the tinnitus really well (always there, but rarely annoys me) - but the dizzyness is horrible. Some days worse than others, and always bad in the mornings when first I wake up. This has been going on since march, and some days I’m struggling.
I still have pins&needles (constantly) in right leg. Neuro said that because spine mri was clear, this couldn’t be MS related. But he only mri’d upper spine (he said he though lower spine was unnecessary). I do occasionally wonder if I should have had full scan of spine. Although new symptoms are dizzyness / tinnitus, (so if MS, it will be brain not spinal involvement) - would it be reasonable to request mri of brain and full spine, as I’ve never had lower spine done and leg symptoms persist?
Also concerned that ENT consultant may have dismissed menierres disease out of hand (when symptoms could fit) due to his (possibly) being overfocused on previous MS investigations. Not sure what (if anything) I can do about that.
Any thoughts / suggestions / ideas greatly welcomed!