Private MRI scan - head or spine?

New diagnosis and before diagnosis
1

Hi all,

I have suspected MS but diagnosis is taking forever on the NHS. I’ve been given an NHS MRI appointment for late January, so have decided to pay privately to get it done sooner.

My question is, should I pay for a head or cervical spine scan? My NHS scan was for both, but doing both privately is expensive for me as a PhD student.

My plan is to scan the region that is most likely to show lesions, on the basis that certain symptoms may correlate with lesions in specific regions? (I’ve no idea if that’s true, just a current working hypothesis. I’m hoping more experienced fellows here do know!)

My symptoms are:

  • Weakness, numbness, pins and needless, burning, in my hands, arms, legs and feet.

  • Numbness in groin area (but full control over bladder)

  • Sharp shooting pain when walking emanating from my feet and shooting up my legs (this was severe 5 weeks ago, but now just a slight tingly and I can very much ignore it)

  • Pressure on my chest, feeling as if I’m being hugged tightly.

  • Lack of strength, numbness and sharp pain in fingers (this is by far the most troubling condition). Typing is extremely difficult. I can now only use my index fingers to type. Fingers, suffer from high spasticity, making it difficult to co-ordinate them when typing, tying my laces, cutting my nails, or generally handling things.

  • NO dizziness. Maybe a little fatigue, occasional throbbing/minor headache but not overly disconcerting.

2

Hi,

Not wishing to be rude, but why do you want to pay hundreds of pounds for something that will be free to you in a few weeks anyway?

A month is not really very long in the history of MS, which, as I’m sure you know, is a lifelong disease. So what may feel like an eternity now is unlikely to have any effect at all on long-term prognosis.

Even if they found anything, it’s unlikely to bring forward your diagnosis by much - or anything. The reason being that even if they saw changes consistent with MS, the next step is not usually diagnosis, but proving it wasn’t a one-off. This done either by waiting for a second clinical episode - which could be months/years away - or, if you’re lucky - never! Or by doing a second MRI several months later, to search that way for ongoing disease activity. So as you can see, neither route results in diagnosis straight away, or even in weeks. MS is one of the most challenging clinical diagnoses to make, so whether you pay £100s to trim the process by about a month, or whether you don’t, you can still expect to be in it for the long haul, and not to get concrete answers from a single scan. It is extremely rare (though not strictly outlawed) to be diagnosed from one scan plus symptoms. I think it would be a brave neuro who would want to risk it. So I think, if your experience works out like most people’s, you need to steel yourself for the process to take months, at least. And I don’t mean months just waiting for NHS appointments, but waiting for your disease itself (if it IS MS) to deliver enough evidence for a sound diagnosis.

If you won’t be persuaded, and are absolutely insistent that a month would make a difference, I’d go for brain, every time. As a general rule, spinal lesions are both less common (as a proportion of all of them) AND harder to spot.

So if the ever budget-conscious NHS is going for one scan only, instead of doing the whole lot, they almost invariably go for brain only (sometimes with cervical spine), as that offers the best chance of seeing something.

But personally, I’d hang on and get the lot done, if that’s what they’re proposing. If you pay hundreds of pounds, but nothing is seen, you’ll always be wondering if you took the wrong gamble, and there was a lesion lurking in the part that wasn’t scanned. So you won’t get piece of mind, even if it’s clear, and probably won’t get diagnosed, even if it’s not. What will you have gained?

My advice is to spare your precious cash and let the NHS get on and do their stuff.

Tina

2 Likes
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morgan616

I entirely agree with Tina above.

Any gain you might make by going private would likely be minimal, and the cost could be in four figures. I think everyone on this forum, diagnosed or not, understands your frustration, you just want answers. Almost all of us have been through it; I had 16 months of repeat testing, including repeat MRIs of both brain and full spine, to gather the required laboratory evidence for confirmed diagnosis. I don’t believe going private would have made any significant gain in my case.

(I am simply someone with MS. I have NO medical training or qualifications).

Wishing you well

Ben

4

Sorry, I meant peace of mind. I sometimes revert to phonetic spelling.

5

Yep, just to add to what I said previously, by endorsing what Ben said. I was diagnosed privately. It still took over eight months from first walking into a GP’s surgery. First scan showed lesions immediately. I was the exception to the rule, because I presented with symptoms consistent with no more than a slipped disc, so they ONLY did my scan.

The neurosurgeon who examined my scan was astute enough to spot a near-invisible anomaly, even though it was not the type of thing he’d been looking for at all (a skeletal abnormality). It was nothing more than a tiny, slightly misty area in the spinal cord - so subtle it could have been a mere fluke of the scan.

So he referred me to an MS specialist colleague, as it obviously wasn’t a surgical problem, and they had me back in and did a full scan of brain and spine (with contrast). Which confirmed the initial spine lesion, as well as suggesting a second (never confirmed one way or the other), BUT found six lesions in my brain that had gone completely unsuspected. There is no way of finding out, but I’d hazard a guess the brain lesions actually predated the spinal one(s), but I’d been getting along quite well with “holes in my head”, as the brain is extremely adaptable, and can often circumvent or compensate for areas of damage, so there’s little net effect.

With the spinal cord, it’s not so easy, as there’s no alternative path available, so I could have had lesions for some time, but the symptoms were not dramatic enough to get me to the doctor’s until one developed in the spinal cord.

Even with six brain lesions and at least one more in the spinal cord, I still couldn’t be diagnosed, and had to wait for corroborating evidence. Which came in the form of another MRI, six months later, which showed new lesions. I was never told how many, and didn’t ask - I reasoned if they didn’t quote numbers, it was probably because I wouldn’t like what I heard! If you know you won’t like the answer, don’t ask the question. :wink: I was only told: “a few, but not too bad” (raw numbers of lesions are not strongly correlated with disability anyway, so a running tally can be needlessly concerning).

But the point is, going private does not mean a lower evidential threshold. Yes, waiting times are shorter, but unless the evidence is obligingly compelling, it doesn’t actually make things a lot quicker overall. Insufficient evidence is still insufficient evidence, and that is the commonest reason for a delayed diagnosis.

Tina

1 Like
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Sorry, more problems with typing, I really must call it a night, as I have some sort of fatigue-related dyslexia.

I meant they initially did only my spine (not scan). It would make more sense if I didn’t substitute random spellings and whole words! Pretty drugged-up at the moment, so I’ll blame that.

Sorry for any other typos I’ve missed.

Tina

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Honestly, you are asking the wrong people. The people with the experience you seek are called neurologists.

A private MRI scan taken with the specification ‘please take some pictures, but I’m not sure what of’ is unlikely to represent good value for money. One based on a few hours’ reading up on Wikipedia isn’t going to be much better. DIY neurological MRI commissioning is up there with DIY bikini waxing, in my opinion. Some things are just better left to the experts.

Alison

1 Like
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In support of what Tina has already said …

A “spine only” problem can usually be Dx-ed by a physical neurological examination.
Mine started that way, and yes I did have a private MRI to confirm it two days later.

But - if it is more than just the spine you do need both areas scanned, so that there is a record that can be matched to the McDonald Criteria (which is what the Neuro will refer to when he is doing a formal Dx).

If you were going to save 6-8 months I would be the first to say “Go private”. When it is just a few weeks (and a saving of several hundred £), don’t even think about it. And … at a modern hospital, the scan results go straight to the Neuro’s PC any time he/she wants them. Go private and you will probably have to carry the printed film sheets around in a great big envelope (think A2 or bigger), just so that the Neuro can have a look at them (and yes, I still have mine).

Don’t dither - don’t do it. Wait!

Geoff

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I would just like to add that I am in a similar predicament ie: private immediately or wait for NHS, my feeling is that even if I am diagnosed sooner privately, I can not afford the treatment privately so would need to go through the NHS process anyway for diagnosis to lead on to treatment.

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I am in a similar predicament ie: pay private or wait for NHS, my feeling is that even if I was diagnosed sooner privately my treatment would need to be NHS (as I couldnt afford private) so I would need to go through the NHS process of diagnosis anyway.

The only benefit I can see is that if I knew sooner, and something else was diagnosed it would allow me to deal with the outcome of that sooner.

11

Hi

You should be aware that you’ve joined onto an old thread that was last active in 2014.

You might be better off starting a new thread, then yo can be explicit about what your problems are, how long an NHS wait you have, how far you are along to road to a diagnosis of some kind and what help we can be to you.

Sue