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Sound familiar? Neuro brush off...

Hi all, First post but I’ll try and be brief. I’m a 53 year old male and have been ill now for a year or so following a bout of flu that may or may not be relevant. I have lhermitte’s sign, dizziness, pins and needles, sunburn pain, and a weird headband feeling around my head. Also periodic lip tingles and eye twitches. Heat intolerance to baths ending in dizziness. My brain mri was normal. My neuro exam showed one hyper reflex knee otherwise normal. My neck mri showed ageing and some stenosis but also patchy high t2 signal throughout the cervical spine. The radiologist suggested B12 but that was ok. Neuro said a software error till it showed on another machine. My bloods were ok…no hiv, lyme, lupus, rare tropical stuff. Thyroid tsh a little under. So the neuro conceded lesions but due to relatively minor symptoms, to him anyway, he suggested I contact him if anything else happens. He also mentioned b12, trauma, radiation, inflammation as causes…but not the elephant in the room. None of these seem relevant as tested for or definitely not a cause…eg radiation. Not much help! My GP initially said anxiety of course. …if it were down to him I’d be popping happy pills and be on my way a year ago. Any ideas what I should do from here?! Second opinion from another neuro perhaps? Thanks for any replies Chris

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‘Come back and see me again if something else happens’ doesn’t sound to me like a brush-off, Chris; it sounds like a professional opinion given after having done the tests necessary to exclude anything urgent and ghastly. And that is actually very good news, although it might not feel like it!

Of course you would like to be told ‘it’s “x” and here’s a tablet to cure it’ but if that hasn’t happened with a first opinion, it isn’t terribly likely to happen with a second. Getting to the bottom of ill-defined neurological stuff does tend to be a slow-motion process. In my experience, generating bustle and urgency doesn’t actually make much difference to the speed in which the important things unfold. But I’m me and you’re you and only you know what feels best for the person standing in your shoes.

Good luck with it all.

Alison

Hi Chris, sorry to hear you’ve had such a rough time of it.

My experience wasn’t too dissimilar, years of bouncing around rheumy and other depts before ending up with neuro. And that was only because I made a fuss - rheumy was extremely dismissive and wrote to my GP stating possibly fibro but that it was ‘not at a concerning level’ - her very words!

It was only when the GP dismissed what she said and redirected me to neuro after a suspected bout of optic neuritis that I started to get somewhere. Fortunately, my neuro was amazing and my MS diagnosis was unearthed shortly after, and type of MS about a year later.

I guess what I’m saying is, if it doesn’t feel like you’ve been looked after properly then definitely ask for a second opinion from another neuro, better they check twice and find nothing than they don’t follow up and something runs rampage unchecked. Good luck and I hope they get to the bottom of it for you.

Meant to add (sorry, having an odd morning) - in terms of your neuro’s response, really there isn’t much more he can say from his perspective. If he can’t immediately see it then sadly it is very much a case of ‘wait and see’ if further symptoms/episodes appear over time.

In terms of asking for another opinion, really that is more for your reassurance than anything else. That said, perhaps another neuro may pick up something if yours missed it. But will be able to confirm for you if there really is nothing else there to support a diagnosis yet. Sorry, it’s not a lot of help but hopefully you’ll get the answers you seek. I do appreciate and empathise with the frustration of being in limbo though.

As I said before, very best of luck!

Hi Alison,

Of course your response makes perfect sense in the cold light of day. I had just been laying there and feeling pretty frustrated after a few days of feeling rubbish again and needed to vent a little. I’m keeping my log of symptoms and will speak to the neurologist if anything develops beyond these annoying, slightly painful issues.

My only issue I guess is that my neuro is a lovely guy and very old school. I understand your point about “bustle and urgency” but I do sometimes wonder if fresh eyes may give a different view. My reason for that is that of 3 radiologists who looked at one of my mri’s, one said software flair, one said genuine signal change as in both axis, and one didn’t notice it at all. Only on a second scan was there consensus. I guess its sown seeds of doubt in my mind about one opinion being the right path to take. Just thought I’d try and clarify my frustration!

Thanks for the reply, I do appreciate your thoughts, which are quite rational and sensible really.

Kind regards

Chris

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Thanks for your reply Gemma…these posts seem to take a while to appear so my previous reply arrived after your response…wasn’t ignoring !

No problem at all :slight_smile:

Really hope you get somewhere soon. Will keep fingers crossed for you!

Hi! Im from Norfolk too! I have recently seen a Private Neurologist as i was so concerened with recent symptoms (eye pain, double vision, peripheral pins and needles, altered sensations in thighs, stiffness/muscle twitches/jerking and tinnitus). They did some reflex tests, checked my eyes and simply told me i was anxious and they wouldnt recommend an MRI…not sure how i feel as im still having symptoms yet dont feel particularly anxious?! I hope you get somewhere soon!

Hi, yes I’m lucky enough to be private through a work scheme and perhaps I was a bit harsh on the neuro. I guess they see so many people and have so much experience that they generally know what they’re talking about but perhaps don’t always deliver it to an individual in the way they should.

There is no way I feel anxious though again how anxiety is judged medically is probably different to how we see it, I suppose “luckily” I have an MRI showing differently and a physical symptom associated with MS, but currently its a wait and see.

Hope all goes well for you too.

Mutleylarf

Double vision merits a same day referral to neurology. Double vision (intermittent i.e coming and going) can be a symptom of a migraine but it is still important to get it checked out as urgent as the double vision could have a central cause. If you go on the NHS symptom checker it advises for double vision to go to A&E as soon as possible.

There is a private MS specialist neurologist in London who also does some NHS work - message me if you would his details.

Hi Lenney, I was told i have an astigmatism by my GP amd Opthamologost an need to wear glasses…it hasnt really resolved anything and i still get pain/peri-orbital numbness all the time. There is something not right but i feel now that i should just keep quiet as i think my Doctors/family/employer are all getting frustrated/annoyed with me. The details of this neurologist would be great as i would like to see somebody different if my symptoms dont improve! Many thanks - Mutleylarf.