First post, Thoughts on my story please

Hello. First post here although I’ve been lurking for a while! I’ll try and keep this short as my thoughts are all over the place.

This episode started with a dull headache on the top of my head that wouldn’t go away following a flu-type bug in March. As well as the headache I was experiencing an extreme fatigue, some intermittent pins and needles and clumsiness and balance problems. The GP I saw referred me to neurologist and I got an appointment for end of October. Things continued, slightly worsening pins and needles and a heaviness and aching started in my left leg, I saw another GP in June and he made a ‘2 week rule appt’ I saw a neurologist (He was quite annoyed and said ‘you realise that your GP made the appt questioning whether you have a brain tumour when that clearly isn’t what he thinks’) anyway, he arranged a brain and neck MRI the following week. A few weeks later I got a letter from him which basically said that there was nothing ‘clinically significant’ on the MRI but if I still felt I needed to see a neurologist I should go back to my GP. During August I noticed that my sight didn’t feel quite so good, there was blurring in the outer third of the left eye and I was experiencing pain in that eye so I made an opticians appt, he told me that there was a marked deterioration in my left eye sight and described the reactions in my pupils as sluggish, he wrote to my GP about all of this and queried retrobulbar neuritis. I didn’t hear anything for a few weeks and then out of the blue got a letter from the original neurologist saying that he was arranging VEP test.

Fast forward to the end of October when I go to the original neurology appt. The neurologist looked at my previous MRI and said that there was an area of concern on my cervical spine which he needed to discuss further with his radiology colleagues, he also rang to get the results of the VEP whilst I was there which showed ‘poorly formed responses’ in both eyes. He did a full exam and said that there were some reduced responses in both hands and arms and in my left leg. The neurologist told me that he felt that there was an ‘inflammatory process’ going on and it was likely that I would need a further MRI and possibly a lumbar puncture but that he needed to discuss with colleagues and he would write to me. He also said that there was a neurological problem which could be something ‘like MS’

So, I got a letter from him fairly quickly and in it he wrote ‘signal change in upper cord seems real and additional subtle changes in the brain stem are noted therefore I have arranged repeat imaging of brain and upper spine to explore these likely inflammatory lesions before deciding whether she needs a lumbar puncture…I have already shared that we may need to do a lumbar puncture in light of the suspicion of optic neuritis’

I had the MRI (with contrast) a few weeks ago and have a follow up appointment with the neurologist at the end of February. I got home from work yesterday to a further letter from him which says ‘The previously noted changes were present albeit on this occasion they were felt to be more subtle. I will go ahead and arrange a lumbar puncture to examine the cerebrospinal fluid at which time she will have additional blood tests’

I suppose that the reason for writing on here and seeking some advice is that I am confused! My particular question relates to the changes being ‘present albeit more subtle’ on the second MRI – My understanding was that the contrast would help to show things more clearly.

Everything seems to be taking so long! In the meantime I continue to feel dreadful with the fatigue, numbness and problems with my eye along with the many other issues that appear on what feels like a daily basis.

Sorry for the length of this essay but thank you for reading it and I would really appreciate your thoughts.

Hello Mand

Unfortunately, diagnosis of MS (or another neurological disorder/ruling out MS) can take some time. It always seems to everyone that they are forever waiting for a test, results, appointments, everything.

With regard to MRI scans, they do often seem a bit contradictory. And to be honest, none of us here can really interpret what your neurologist means, for that it’s a case of waiting until the appointment date.

With regard to the contrast highlighting inflammatory lesions more clearly, it could be that your first MRI showed the lesions because they were in an inflammatory state. The inflammation could have been improving by the time of the second scan, so changes were ‘more subtle’.

It may be that having a lumbar puncture might make a diagnosis of MS either ruled in or ruled out. About 80 to 95% of people with MS have Oligoclonal bands in their cerebrospinal fluid but not in the blood. So the optic neuritis and lesions on MRI would be more suggestive of MS if you test positive for O bands. That is to say that an LP won’t be a definitive answer, but the entire picture is looked at with each test providing another piece of a puzzle.

So what the neurologist would be looking at is your physical examination, the ON, MRI scans, VEP test and LP. With all of these results, plus your history of symptoms, a diagnosis might be possible. Even then, a neurologist might want to wait and see what happens next. And if your LP was negative, that might add weight to a negative diagnosis.

You are welcome to the forum. While you wait for your appointment, feel free to voice your concerns and worries on here. The forum members will do their best to help and support you.


Thanks for the response Sue. What I’m struggling to get my head round is that at the time of the first scan my symptoms were less in number and less severe than when I had the second scan. Do you know if the inflammatory state happens in advance of the symptoms or if the symptoms occur at the same time? Thanks again Mand


I had a further question and wonder if anyone knows the answer. How do neurologists work out whether different spots of inflammation seen on mri happened at the same time or at different times? And also whether anyone had any answers to my previous question?

Thanks in advance


Hello Mand

Theres so much I don’t understand about MRI scans. I think the neurologists just compare old scans with newer to see what appears on later scans that maybe wasn’t there on the earlier.

Certainly the contrast agent will show up current inflammation, so it’s possible that when you had your first scan, there was inflammation happening at the moment of the scan, and this wasn’t showing up on the next scan because the inflammatory action had stopped.

In terms of when symptoms feel worse, I would have expected the worst symptoms at the point of inflammation, but that most certainly isn’t the case for people with progressive forms of the disease (they don’t tend to the inflammatory periods that people with the relapsing remitting / secondary progressive type get but they do have new and worsening symptoms). So it’s entirely likely that formation of new lesions isn’t always concurrent with new symptoms. And that makes sense because many lesions appear with no symptoms, so called ‘silent lesions’.

Apart from that (which is mostly guess / logic work), I just don’t know enough to help.


HI Mand,

At this stage, there are many complications your symptoms point to. There is something called APS, that mimics MS symptoms but can cause bad migraines.

Contrast is only used with NHS MRIs as their resolution is 1.5 Tesla usually. You can have a 3T MRI that gives a much better image/resolution but these are mainly private MRIs.

One tip is to purchase a copy of your latest MRI; it is not unusual for them to go missing then you have nothing to compare with future MRIs.


Thank you both for your replies. I seem to get new questions every day so its really good to be able to come on here and ask questions and glean some knowledge from other posts - everyone is so supportive and really seem to want to help, I suppose because the majority of you know what its like playing the never-ending waiting game for tests and appointments. I do have times where I feel quite scared but it helps to know I’m not alone in this. Thanks again Mand