I have been living overeas and I’m due to come home for good in the next month
So far I have been very lucky (overseas health insurance) and had a speedy DX process with MRI, LP and VEP tests all being done in the last 3 months, and all showing results indicating MS. My neuro has said it is highly likely that I have MS.
In order to DX MS he has suggested another MRI to see if new lesions have formed over the last few months (I’ve had a few mild events, nothing significant I dont think, just numb face, tongue, neck etc…). My first question is, would a neuro in the UK suggest another MRI in this situation without significant new symptoms? My observation from this forum is that it is like trying to get blood out of a stone getting full testing even with significant symptoms (eg, people being given MRI on brain only and not spine, and without contrast…) Should I make sure that I get the full MRI done before I come home?
My one and only lesion is in c-spine and my brain was clear, so I’m aware that I probably would have been swept under the carpet if I’d had my first MRI in the UK! I doubt they would have even done LP and VEP, of which I failed both!
Also, if I get a full DX here, do you think that would be honoured, or would I be reassessed once back in the UK?
I read such awful stories on here about people really struggling with being taken seriously, and seeing GPs and neuros who just dismiss them. Does this happen on the NHS and privately? Is it worth paying for private treatment? I have heard of MS nurses - Do you have to have a full DX to have an MS nurse, or can you have access to one when you have a “highly likely” DX?
Also, any recommended neuros in NW England?
So many questions, and i know most are vague, but any opinions much appreciated TIA
Difficult question(s)! I would imagine that, as with most medical care in the UK, it varies a lot by postcode. One thing I think I can say fairly certainly though is that you are highly unlikely to be diagnosed with MS without having a new lesion in your brain and that is in an area that is typical of MS. (The minimum according to the McDonald criteria is one lesion in at least two typical areas.) I honestly haven’t a clue what the procedure is when someone comes home with a new diagnosis - whether they just accept it or do more tests to confirm. Perhaps it depends on how conclusive your existing test results are? And/or who it was who diagnosed you?
I would have that scan done before I came home, if I were you. It won’t cost you anything, and it might just supply enough information to ensure that everything continues smoothly when you come home. Do make sure that you have copies of everything to bring home with you - it will make life much easier I would think. I would also make an appointment with a good MS specialist as soon as possible when I got home. If you’re still registered with a GP here, then maybe you could get the process started already? Appointments do take a while to come through usually, so the sooner you get a referral, the sooner the appointment will come through. Going private is a great option for seeing someone quickly, but make sure you pick someone who is a specialist and, ideally, who you want to see ongoing. It’s the same people as on the NHS, so the main difference is the money (£150-£250) and possibly, but not always, a longer appointment.
As far as MS nurses go, it’s another postcode lottery I’m afraid. Hopefully, when you see an MS specialist, you will also be assigned a nurse even if you haven’t got a full diagnosis by then.
As far as who to see in NW England, it rather depends on exactly where you are going to be. Why not try the “Near me” function on this site? - the third from the right white box towards the top of this page. I think that the Walton Centre, Merseyside, is the main one that is very highly regarded in the NW, but there are also really good, individual MS specialists who are dotted about too. Once you have an idea about who you could see, then you could always put a post on the Everyday Living page to see if anyone knows anything about him/her and if they’d recommend him/her.
Btw, with an MRI showing a cervical spinal lesion plus positive LP and VEPs, I cannot believe that you are going to get dismissed by anyone. They may quibble the exact diagnosis, but I really can’t imagine any MS specialist telling you it’s nothing, especially since you have had new symptoms since then too. Try not to worry.
Hi, I live in NW and my neuro is based in the Walton Centre in Liverpool. I can’t recommend them highly enough though they rule out everything before ms and I was in limbo for over a year. There are good and bad in every walk of life and neuros are no different. For every horror story there are at least 10 positive ones. Take as you find and when not happy there are systems in place to help you. Good luck, Chis
I’d probably get a repeat MRI done before you come to England. As Karen said your MS would probably have been missed in England because of your mild symptoms and I would say there is no stringent protocol here in the UK. It seems that some people get investigated fully other people don’t. Eg most my symptoms are relatively mild (but not resolving really) and I’ve had bloods, MRI and EMG. The neuro has decided on no LP and EVP now (after initially offering) but I have a repeat MRI. Someone in a different area will get something different.
As Karen said keep copies of everything you’ve had done so that when you’re seen in the UK they’re not starting from scratch or repeating tests that you’ve already had done and don’t need.
The NHS in England is fantastic in some areas and not so great others - as others have said it’s a bit of a postcode lottery. But there’s nothing to stop you from seeking second opinions if at any point you’re not happy.
Best of luck