I posted on this forum a while ago as I was having neurological symptoms, and well meaning (but unhelpful) GPs were mentioning MS as a possibility. Quick list of symptoms: forearm pain and reduced manual dexterity, loss of taste on left side of tongue, partial numbness and weakness on left side of face, tinnitus and pressure in left ear, left jaw pain, brain fog, vertigo and double vision (now improved but residual balance and vision issues). I was actually diagnosed with vestibular neuritis (inner ear inflammation) by an A&E doctor.
I’ve now seen a neurologist and had an MRI scan. He called me this morning to tell me I have a patch of inflammation at the base of my skull that is responsible for some - but not all - of my symptoms. Only the loss of taste and cheek numbness. He seems to think anything that doesn’t show up on a scan is down to functional neurological disorder, told me a third of people who see him end up diagnosed with FND (is it me or does that seem like a ‘catch all’ diagnosis for ‘we don’t know what’s wrong with you’?). He also dismissed the vestibular neuritis diagnosis, even though there is definitely something going on with my left ear.
Next step is blood tests and a lumbar puncture. I don’t know how long I’ll be waiting on those as he’s transferred me to NHS now (I used my private health insurance for the initial appointment and scan).
He said that it’ll probably be a case of watching and waiting over the next 6 months, depending of course on what the tests come back with. And that this could be a one off event - clinically isolated syndrome - or the start of MS. He may - or may not - prescribe some medication to prevent anything else happening.
I have a few questions that I’m hoping you all can help with:
I’m still experiencing symptoms - I haven’t worked in 2 months and can’t drive (vision issues). I asked him how do I feel better for now, he said just allow time for my brain to heal. Is there anything I can do to help this along - diet, supplements, physiotherapy etc?
I’m meant to be going on holiday next month - how do I get travel insurance when under medical investigation? I don’t have a diagnosis yet
What do I do about work? I’ve been extending my sick line 2 weeks at a time, as I don’t know when or how quickly I will be fit enough to work again. Should I see my GP and ask for a longer term sick line?
I’m kind of at that point where I know a bit more but not a lot more and it’s hard to know how to feel about it and what to do next