The letter says I have ‘a radiologically isolated T2 weighted hyperintensity in brain with normal oligocional bands in CSF.’ At the appointment I said that the opthamologist had recently noted I had bilateral optic pallor and to discuss it with the neurologist. The neurologist said he was discharging me. The letter didn’t mention that and he said he was contacting the opthamologist. It ends with saying I don’t currently have MS. I’d like to feel reassured, but I’m not sure what he means. Thanks.
Are you saying when the letter from neuro said he was discharging you, he was unaware of the Opthamlogist report?
If this is the case, then perhaps you need to cantact your gp. You need to know what’s happening regarding the optic pallor at the very least. Sometimes this can be one of the conditions relating to MS but not always.
Thanks. I told him at the appointment about the optic pallor. He talked about further tests, then changed his mind and said he would discharge me. His letter doesn’t mention discharging me and says he’ll contact the opthamologist. He already knows I have bilateral optic pallor as I had a quick note with me written by the opthamologist in case his letter didn’t get there in time. It feels as though one consultant has passed me to another thinking that the optic pallor is someone else’s problem.
I’ll try & answer your questions, going from my own experience, as I also have a diagnosis of ‘radiologically isolated incident’. But I’m no scientific expert, and my neurologist didnt explain it very thoroughly to me, so I might not be totally right here… but I think that…
‘normal oligonical bands’ means that results from a lumbar puncture were within normal range, and therefore not indicative of MS (although some people with MS do have normal LP results, so a normal LP result doesn’t rule MS out completely).
‘T2’ refers to the type of MRI scan you had. ‘hyperintensity’ means that a mark showed up on the scan.
Apparently marks / hyperintensive ‘dots’ be caused by a number of different things. MS is one possible cause, but they can also be caused by non-serious conditions such as migraine headaches or the normal ageing process (I was told they they become much more common after age 30). I was also told that, contrary to what I’d previously thought, it is “not terribly abnormal or unusual” for a dot to show on a scan. Apparently, the size, pattern, shape and location of the mark/s usually gives the neurologist a good idea as to whether they are likely to be caused by a demyelinating condition such as MS, or whether it is more likey to be caused by something less serious.
If you still feel that you may have MS, you could request a follow-up scan, to see if any further hyperinensive marks occur over time. Not sure if they’ll agree if they’ve discharged you already, but might be worth asking?
I had two scans. The first showed several marks, and the second showed that some of these marks might have healed, as well as the possible addition of some new ones. I say might, and possible because the neurologist said that they were mostly very small, so it was difficult to tell, and also the two scans had been done on two different machines, which took images at slightly different time intervals, so it was difficult for him to compare the two sets of results. (bloomin NHS!!!) He reccommended a wait-and-see approach, and said there was probably nothing else to do at this point, but that I could be re-referred if I have further difficulties.
So my official diagnosis is ‘radiologically isolated syndrome’. My neuro said this used to be a fairly uncommon diagnosis, but that it is becoming more and more common. The textbook explanation of ‘radiologically isolated syndrome’ is that marks have been found ‘incidentally’ on an MRI scan, (usually when they have been doing the scan for something completely unrelated), and the patient experiences ‘no symptoms’ of MS, and therefore the results are a surprise for the patient and the doctor alike. I was a bit confused, and , to be honest, rather ‘pee’d off’ to be told that was my diagnosis… I can’t fathom how it can be an ‘incedental finding’ if they did the scans during investigations for MS, and I can’t fathom how they can say ‘not causing symptoms’ when the reason they did the scan in the first place was to investigate the symptoms??? !! My neurologist then told me that it was ‘complicated’, and that ‘radiologically isolated syndromes’ are an area for new study, and that the textbook description doesn’t fit all cases. Clear as mud, eh!!! o.O
In terms of diagnostic categories, i was told
radiologically isolated incident / syndrome means that there are marks on MRI, but physical exam / other tests don’t support an MS diagnosis, and the marks themselves are not of sufficient size or number to indicate MS. But, there is a chance (I was told between about 30 %, but I’m not sure if that statistic is true for everyone with this diagnosis) that it could turn out to be MS later down the line.
Clinically isolated incident refers to an ‘event’ which has had an impact on the patient that is definite and observable on clinical / physical exam, and usually is supported by marks on MRI scan. I was told ‘clinically isolated’ is a more ‘worrying’ diagnosis than ‘radiologically isolated’.
MS proper, when there is sufficient evidence on MRI scan & clinical exam to support full diagnosis.
Hope this helps.
I have really struggled to understand / come to terms with the idea of ‘radiologically isolated’. Even on this forum, not many people seem to mention it (although i know lots of people are in the ‘clinically isolated’ situation). At first i felt like my doctor was being really dismissive, but i don’t think thats the case. It is, as I was told, a fairly big area of research at the moment. Though that doesnt really help people in our situation, I know.
PS… interestingly enough, I also have optic pallor… it was my optician who advised me to ask for referal to neurologist in the first place!
Thanks. I wrote an email to query the discharge as they found the optic pallor afterwards. He has copied me in to a letter where he has asked a specialist in neuro opthalmology and MS to review me. Whilst I appreciate a second opinion it bothers me that he didn’t have confidence in his own decision.
Asking for a second opinion idn’t necessarily a lack of confidence in his own decidion, it could be a recognition of the limits of his knowledge and experience and reccognition that his colleague is more knowledgable and experienced in this area.
I’d rather my consultant sought a second opinion than got things wrong.
Usually I’d be fine with it, but he changed his mind halfway through the consult from having more tests to a discharge. Then the letter didn’t mention discharge, so I queried everything as there were other errors. I’ve gone from discharge to a different consultant and that’s why I don’t have much faith in him.
I fully appreciate why you feel confused, I would too. It doesn’t take much to confuse me, since my diagnosis…we can do without it. It seems now though, that the right things are being done for you Good luck
Maybe not confused but let down by the docs
OK, yes, I can see what you don’t have much faith in your neuro. Hopefully this other neuro will inspire more confidence.
Thanks. He certainly can’t be any worse!