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18 months and 4 departments later...

Hello all,

Posted almost 1 year ago now! Back then I was waiting for am MRI on my knee, ordered by the musculoskeletal team to rule out arthritis.

After this, MRI came back clear and was then referred to physiotherapy, who then referred me for hydrotherapy. Hydro was the worst, as it made my entire body stiff, so had to stop after 4 sessions.

Was then referred to rheumatology who suspected that I may very well have fibromayalgia. But I still had symptoms that couldn’t be explained by this, so was referred to neurology.

After 9 months after my doctor started a referral to neurology, I finally got an appointment. The first doctor I saw was a locum, who ordered an MRI (without contrast) of my head and neck. He was lovely and was concerned about my field of vision.

After waiting a few weeks for the result, the next doctor on my case stated it was “basically normal”, but then stated seeing “2 tiny non-specific frontal lobe high signal intensity foci”. Then, rudely in my opinion, stated they only arranged a follow up appointment after this because the radiologists had told them to…

When I finally saw yet another neurologist, she rudely suggested that it was all in my head and that my scan was completely clear. Rightfully I said “but could I not have lesions on my spine?” to which she stated that 100% of all cases show lesions on the brain (something which I Googled shortly after, and low and behold around 20% of MS patients only have lesions in the spine). She recommended I take beta blockers and magnesium. I refuse to take the beta blockers as there’s nothing wrong with my heart, but I have taken magnesium and it has aided with some of the symptoms (unsurprising when I found that MS patients are usually advised to take it to help with symptoms).

She has also now referred me back to rheumatology, despite me telling her that they were the ones to refer me to neurology in the first place.

I write this today after trapping a nerve in my neck on Friday, having to call out a paramedic and now take various painkillers due to muscle spasms. I’ve also been told to take 2 weeks off work.

I asked my GP today if she could refer me back to neurology and she basically said that rheumatology will have to refer me back… which could be months away as I’m now awaiting an appointment for them.

I have seen over a dozen consultants over various departments and keep getting bounced around like a yoyo. I have also visited A&E 6 times in the last year and a half. I’m sore, fed up and losing the will. I was advised to see someone privately a year ago and its starting to look like my only option.

I guess I just want to know this is normal and that I’m not the only one who has had to wait for so long etc. I can’t really afford to go private but I also can’t really afford to lose my job…

Does anyone else have a similar story to me? Have you had to jump through 100 hoops? Have any of your had clear brain scans, but still get a disagnosis?

Oh blimey Jade. I can’t help you out with experience of clear brain scans, just wanted to offer you some sympathy, a virtual shoulder if you like.

You really have been through the wringer. I can’t think of how you can simplify things.

Perhaps having a single private neurologists appointment? But if possible, get hold of your various test results to show to the neurologist, including MRI scan. You should be able to get a disc with the scan on it, you would need to phone the hospital where the scan was done, ask for the radiology department and find out how and for what cost a disc may be obtained (sometimes there’s no cost, sometime £10, and I’ve paid £25 before).

At least you could have an independent view of your symptoms and the scan you’ve had. You still need a referral from your GP, but there are many neurologists who have a private practice. Just do a search on your area and ask for a referral to the one that seems most appropriate to you. It may cost a bit, but you can always use a letter from a private neurologist to spur your GP into referring you back to a neurologist on the NHS (even maybe the same doctor - many have dual practices.

It’s certainly true that a single consultation will cost a hundred or so pounds. But the tests are the most expensive part of neurology, so if the private neuro thinks you should have more tests, you basically need a referral back to the NHS for the tests.

Best of luck.

Sue

Hi Ssssue, thank you for your comments - it’s nice to have even a virtual shoulder at this point!

It’s so hard to accept that this is simply how the NHS works. Surely it has cost the NHS more over the past 2 years trying to rule out everything else (rather than simply going straight for a lumbar puncture)? I’ve been to multiple departments, seen multiple specialists, had at least 15 blood tests, various visits to A&E, 2 MRI’s, multiple xrays, hydrotherapy, physio and countless meds.

Even the paramedic before last (who had been on the job for 40+ years) was 99.9% certain it was MS - he took me to A&E to get a diagnosis once and for all and they simply fobbed me off with no advice or medicine… just “take paracetamol when you get home”. I’ve never felt so invisible.

I have already scoped out a private neuro, who also works at my hospital. I just need to bite the bullet and book an appointment… I guess I’m just worried about being fobbed off again.

I haven’t up until this point due to work. I commute for over an hour to and from work, so actually can’t get anything booked during the week (I have to get my partner to book GP appointments for me). But now I have 2 weeks at home I might get one booked for next week when I’m feeling a little better.

Sorry for the massive rant - I’ve got nobody else to rant to (not anyone that even remotely understands anyway).

Thank you for letting me rant <3

Rant away Jade. I think you’re owed a decent moan.

You will (unfortunately) still need a GP referral for a private neurologists appointment, but I don’t think they can refuse you. Let’s face it, you’ve been all round the houses with your attempts to get answers to your symptoms.

Don’t rely on it being MS until the neurologist has finally finished with MRIs, LP, any other tests they fancy, started at their computer, doodled on a scrap of paper, scratched his or her beard and finally said the words. Until a neuro has said ‘you have MS’, you shouldn’t depend on that being the outcome.

But just try and get on the case. See if you can get a solution!

Sue

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Thank you, I think I’m all moaned out for today haha. I’ve contacted the private surgery now, so hopefully I’ll hear back soon. I just want an answer really, currently running off of a vague diagnosis for fibro. I’ll certainly be on the case much more now, it’s been far too long a journey already! Jade x