Hi, this is my 1st time posting.
I visited my GP over summer 2025 with increasing symptoms of facial and eye sensitivity and pain. This was more out of frustration to be honest as it’s a real nuisance.
This wasn’t my 1st visit about it but it had been a few yrs.
Gp was great to be fair and referred me to a neurologist. Within 6 weeks I had an apt for a brain MRI but there’s been nothing since. No update on the results, no apt. Rang booking up who informed me it’s a 65wk waiting list to see the neurologist. What i dont understand is why request the scan if I won’t be seen for over a yr.
Anyway since seeing the GP in the summer, I have been logging all my symptoms, severity, etc along with historic conditions that were not discussed. I visited GP again today, who’s decided to complete a full blood profile and after these results come back she will re-write to the neurologist with the updated symptom info and any blood results.
I dont really know what I’m asking for but just very low with the long wait time and not knowing. Will a diagnosis change my outlook??? Who knows. Feel kind of trapped in a world of unknown
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Hi there,
That sounds a really tough position to be in, I feel for you.
I think the waiting time to see a neurologist varies in different parts of the country. I wonder if you could ask to be seen by a different neurologist team in another area (if travelling is possible) if the wait time is shorter?
it took about a year for me to get my diagnosis, and that was with a pretty quick wait time (3.5 months ish).
Good luck x
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It’s not ideal to be waiting as long as that for a neurologist appointment @lcbuckley17 unfortunately it is quite common depending on where abouts we live. As @lnp8acr say’s, you could always ask your GP to refer you to another neurologist in a different area if you are able to travel. Though it might be the same neurologist! I see a neurologist in King’s Lynn in Norfolk and I know that at least one of them also works in another hospital in Norfolk and also in Cambridgeshire.. If you are in the fortunate position to be able to pay, you could go privately, at least at the beginning. You may get a diagnosis quicker although as we know, that neurologist more than likely sees both NHS and private patients. Getting a diagnosis may or may not change your outlook but, at least you’ll know what you’re looking at.. what kind of challenges might lay ahead for you. It’s a good idea to always write things down about any new symptoms and also any questions you might wish to ask whenever you see not just your GP but, also a neurologist when you get that appointment. Wishing you well and hoping you manage to get to see a neurologist as quickly as possible.
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That’s awful - I’m so sorry. I have nothing to add to others’ suggestions.