To accept or put up a fight

So, since I saw my consultant a few weeks ago I’ve had quite a few new symptoms. I knew my scan was coming up so was patient as was hopeful that would produce something useful. But I don’t feel very hopeful since they refused to do the contrast the consultant asked for. I won’t see my consultant for months now and my gp won’t do anything it seems as I have a consultant so it’s out of their jurisdiction. So, do I just accept the fact that I’m not going to get a diagnosis anytime soon or do I fight wth reluctant GPs? I don’t think I’m going to win that fight, so I guess I just have to sit back and see if either something gets so bad that I have to visit A &E or try and ignore the symptoms and the what ifs. They were mostly ignorable today apart from 5 lots of hiccups and some bladder minor issues. sigh anyone know how much it costs to pay one off for an MRI ?

Hi Alice,

I replied to you before, but please wait to see what your scan says, before you either start making a rumpus, OR paying good money for unnecessary scans. An MRI scan is hundreds of pounds, depending on exactly what you have scanned, and with or without contrast. If with contrast, which is what you’ve set your mind on - it pushes the price up, because there has to be a doctor present, not just a radiographer.

As I replied to you last time, you do not need contrast to be able to see MS lesions. You have had a scan - the results of that will show whether you have brain changes suggestive of MS. 90 to 95% of people with MS do have changes visible on MRI. So IF you have MS, or any sort of MS-like condition, the chances are very high that a scan would show it - regardless of contrast. The contrast is not the crucial bit - having the scan is the crucial bit.

What happens next depends on what they see. If there are abnormalities, then it is likely you will receive an appointment to see the consultant sooner than “months”. Having said that, MS is a chronic, lifelong disease, but rarely a medical emergency (people don’t drop dead of it suddenly), so the follow-up would be processed as serious, but not urgent.

A&E is rarely an appropriate place to get help for MS-like symptoms, as they are not an accident, and only very rarely an emergency (exceptions would be if you couldn’t breathe, couldn’t pass water at all, couldn’t keep food or fluids down at all - you get the idea).

For anything short of an emergency, your GP should be the first port of call. They are allowed to treat symptoms, even in the absence of a confirmed diagnosis, AND they may be able to accelerate your appointment with the neurologist, if they believe there are grounds. Basically, your GP is the gateway to other services. If things develop, but you’re not scheduled to see the consultant for some time, report it to the GP - that is the standard path.

An MS diagnosis does take a long time, though, as it is one of the hardest conditions to diagnose, and there is no 100% certain test. Usually, yes, you do have to live with the “what ifs” for quite some time, because they will not diagnose until they are sure - and that means collecting a lot of evidence, and ruling out everything else it might be. Unfortunately, all of that takes time, but it matters for your diagnosis to be right, not just fast, as there’s no point getting one that’s quick but wrong. You might be given unsuitable treatment, or miss out on the right treatment.

I know it’s hard, but most people here have been through this - some who went on to be diagnosed with MS, others with something else altogether, and many, like yourself, still waiting. Please be patient and wait to hear what your scan showed. If you have concerns or new symptoms in the meantime, return to your GP.

There is no point “fighting” for new or different tests, if you haven’t waited for the outcome of those you’ve already had. If your MRI were to show nothing, then it would be fair to ask your GP what next: Are there other avenues to investigate? Do you need referral to a different department, for example?

But you are not at that point yet. You are waiting for scan results that have a good chance of showing something. Don’t write them off as “useless” until you know the results.


I agree with the above, and just for info you are certainly looking at at least £400 probably more for a private scan, Leah :slight_smile:

I think Tina’s about right. Keep your powder dry, and wait and see what the scan says. No need to think about plan B while you have not yet run out of road on plan A.

There is almost always a lot of watching and waiting to be done when there is neurological stuff amiss. That doesn’t mean that people aren’t doing their jobs properly, that’s just the way it works. Time is a great diagnostician. As my neurologist said to me after my first attack, when I was convinced I knew what the trouble was, ‘There’s no such thing as single sclerosis.’ He said wait and see, so we did. He knew that, if it did turn out to be MS, it would introduce itself clearly enough, given time. And it did. But while there’s a chance that it will just melt away for ever, why force the issue?


Thanks and appreciate the wisdom and I’m not feeling inclined to put up a fuss, seems no point. Just frustrated. I think some confusion perhaps too as it was a CT. So the chances were not great with contrast but at leat possible it would show. Without? Ct not likely. And seriously if a few hundred rather than thousand for an MRI I would certainly consider that at this point. I can’t do 6 months more not being able to think at work. And I need to drive. Stabbing sudden pains in my feet and numbness are not good when foot on a pedal :frowning:

It does cast a bit more light now you have clarified the scan was NOT an MRI.

That indicates MS is probably not the prime suspect here at the moment. As it’s not part of the usual testing for MS, I don’t know much about CT scan with/without contrast.

However, I think you still need to hold fire and see what the results actually said. If, as suggested, you have had a stroke, I’m presuming the CT could confirm this.

The only time I’ve ever had a CT scan was following a RTA - nothing to do with MS.

I definitely didn’t have contrast for that, although I did warn them it might feature “abnormalities”, due to my already being diagnosed with MS. They never confirmed whether it did or it didn’t - only that they saw nothing that caused them concern regarding the accident. So either it was completely normal, or they saw only things they were satisfied were MS.


Alice, I am sorry, it had not clicked that you were the person whose consultant is from the fatigue clinic (probably not a neurologist then) and that the scan is a CT scan (not and MRI) and that you are the one with the GP who likes to send you haring off in all directions in search of answers to individual problems without (apparently) stopping to think whether there might be any connection. I had mistaken you for someone who was just getting a bit impatient with the system, and I apologise.


Thank you, Alison, though really no need to apologise.

I was feeling reactive. I was really upset feeling that a chance of making sense of things had been taken away.

Am still quite tearful.

And then when the GP just seemed to ignore the difficulties I’m having because I have a consultant I just felt lost as there seems to be nowhere to turn to.

Am I really just supposed to just put up with my bladder keep failing, and feeling scared to drive for 6months? (The consultant wanted to see me in a month after my results, but admin gave me a 6month appt due to queues)

So, I’m enquiring about costs to see a private GP, and in the meantime am going to do my very best to ignore symptoms and

see what happens. I had a good couple of months at the beginning of the year where I felt great, the fatigue pretty much went.

Maybe that will happen again soon.

Speaking as someone who has recently returned to driving after 6 months of not being able to due to various symptoms, including visual issues, I can honestly say it was probably the longest 6 months of my life so I can totally empathise with your frustration! Being reliant on others who, in my case, are lacking in any understanding or patience and completely devoid of sympathy for whatever the hell this invisible illness turns out to be, was painful at best! It felt like what little freedom I had left had been taken away from me. I felt isolated and alone. I became hugely depressed and that fed many of my symptoms including fatigue, pain, bladder probs, sight issues etc. The problem the NHS has is that they are under resourced and cannot cope effectively with the added onslaught of other countries medical needs as well as our own. They have experienced overwhelming cutbacks much like they have in education and throughout civil services. The majority of Doctors and nurses do a damned good job but there are the few whose arrogance and rudeness ruins things for the masses. If your Consultant asked to see you after one month but the lowly admin assistant on not much more than the minimum wage despite juggling a thousand and one things (poor guys), say you have to wait for 6 months, I’d personally suggest you contact the hospital itself and request to be put through to your consultant’s secretary. You can often get things moved along or at the very least be put on a list to replace those who cancel - of which there will be many within a 6 month period. If you need to lay it on thick and tell them your symptoms are changing/getting worse then my advice would be to do it! Explain it is having an impact on your mental health - don’t be scared to use that, it doesn’t mean they’ll lock you in a padded cell! Lol Too many people are scared to talk about mental health but the fact is, if you’re genuinely suffering this level of anxiety it will impact on your physical symptoms, thus making things worse for you. Explain that to them. Assert yourself. It may not work every time but what do you have to lose by trying? Good luck. Autumn x

Thanks Autumn Fairy :slight_smile: I think I will call the consultants secretary in a week or so once he’s had chance to look at the scan etc. I do think he needs to know about my recent flair up and new symptoms and GP won’t pass on the information. I did finally hear back from the continence clinic today who have apparently sent me an appointment out, so whilst I am dreading the possible investigations there, it may be useful and at least it’s something measurable that the drs can see rather than all the tingling and pains and numbness. Trying to hang on in there patiently, though a little shaken by all the news about strokes because that was the other possible cause my consultant was concerned about. And certainly from my GP I can see how people do get dismissed with TIA symptoms. So sorry you had such a rough 6months. Hope you never lose driving again- That’s the thing that scares me most I think. Glad you’re back on the road. Thanks for the encouragement x

Stroke is (I think) pretty much one of the standard suspects that needs to be eliminated when there is sudden unexplained neurological stuff going on. Just because htey are checking it out doesn’t mean that that’s what you’ve got. Many of us with MS have had ?stroke at least once, either before dx or (in my case) years after when a sudden relapse looked to them more like stroke than MS (it turned out to be only MS!) I still remember the fear of thinking I might have had a stroke - not funny, that. Definitely one you want crossed of the suspect list ASAP.