Hi everyone. I’ve been referred for a brain and spine MRI on the NHS. But I don’t know whether to go private to speed things up. My dilemma really is whether it would make any difference in terms of starting treatment and therefore prognosis. I have heard that the sooner you get a DMT the better, but is a few weeks or months going to be a game changer?
Thank you!!
I went private for my neurology initial appointment and my MRI. Only because I was advised that there was a waiting list of 53 weeks on the NHS. So I think it would depend on how long you have to wait. For me it was def worth it as I would only have had my initial appointment with neurology last month, whereas I’ve had my 2nd MRI, initially diagnosed with CIS and now RRMS. I start treatment this week.
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From what I’ve seen, starting treatment sooner can help, but a few weeks or even a couple of months usually won’t change the big picture that much. If you can handle the wait without too much stress, NHS is still solid.
Hi,
I went private for a neuro consultation, but only after I had spent ages (years) on the NHS waiting for several MRIs, appointments etc.
One of the questions I asked my private neuro was, how urgent was it to start a DMT? His view was that yes, sooner rather than later, but that it was possible to get too obsessed with this. I think his feeling was that it’s important not to hurry the (difficult) diagnosis and risk getting things wrong. Other neurologists may take different views. There is clear evidence that earlier treatment is better but, like you, I wondered if that means months, weeks or what.
Diagnosis is often not made from just one MRI scan I think - they may request a second MRI to assess changes, or a lumbar puncture. They also do a whole raft of blood tests to check for other conditions. So it’s often not as simple as looking at an MRI and saying: that’s MS. Look up “MacDonald criteria” for more info. There’s also a video on “limbo land” on the MS Trust website, explaining why it takes time.
Other things to consider: If you get a private MRI you need to know whether or not you want contrast (my neuros never asked for this). The MRI then needs to be interpreted by a neuro-radiologist before it goes to a neurologist. This slows things down. It’s also something you need to ask about when you go private. What does the price include? Is the radiologist looking at it someone who knows about MS? Try to get your medical history (symptoms etc.) to the radiologist so they know that when they look at your scan. Also, do everything you can to get your own copies of your scan, including on a CD if possible. Getting a scan transferred from private>NHS or hospital>hospital is like pulling teeth. But it’s important to keep scans together so radiologists can compare over time.
If you go private for the neurologist consultation part, be very careful whom you choose. I’d look for online reviews, check whether they are involved in research - basically check everything you can. I had a really bad experience, then a much better one. Also, beware that one (expensive) appointment might not get you very far… again, it can take several appointments to get to diagnosis.
Once you have chosen treatment you then need to rejoin the NHS, quite rightly at the back of the queue with everyone else, waiting to start your DMT. This part took about 12 weeks for me.
Throughout the diagnosis process, with the NHS, I’d ask at every chance “how long” for results, next appointment etc. It can be very hard to be left drifting in limbo with no idea when to expect progress.
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A good and useful post!