Hi all. I posted here under the heading frustrated a week or so ago.

I have had 2 MRIs which the consultant described as dramatic though don’t know much more than that and he suggested a third MRI in January. I have had a LP which was positive for type 2 OG bands. In September he thought I might have ADEM.

Anyway, the reason for this post is because after visiting my GP for backache I also mentioned that I had strange sensations in my arm and leg. He refererred me back to neuro who saw me this morning. He is lovely and I trust him completely but he was bewildered as to why I had been referred. He coiuldn’t see any problem in my arm, I did tell the gp it was only a sensation and was annoying but not disabling and the consultant accepted this. He did say that it might be caused by something in my neck or spine. He still doesn’t want MRI until January.

My question really is should I report every sensation to the GP or just keep quiet as it is a long way to the neuro and I felt like I had wasted his time.

Also should my neck and spine not have been MRId previously?

Thanks for reading,


Hi Chis.

Well, I guess it didn’t hurt, which is the main thing - you did what your GP wanted you to do (usually a wise move for long-term relations!) and the neuro won’t be annoyed with you (although he might be a bit with the GP!). I didn’t realise it was a long way away though :frowning:

If I were you, I would keep a diary - you know you’re having the MRI in January (did you get a date confirmed?) and I bet he will review your images soon after and get you an appointment to discuss the results. If something weird & mild happens, then stick it in the diary. If something weird and not so mild happens (e.g. if you didn’t have all this going on and it happened, you’d see the GP), then stick it in the diary and see the GP. Compile the lot into a concise list for when you see the neuro. Tbh, what the neuro’s probably interested in is a relapse - so something significant that lasts at least 24 hours and can’t be explained by anything non-neurological.

Please chase the MRI appointment - neuro’s expectations can be wildly off versus the realities of appointment diaries. If the MRI unit don’t know anything about it, then you need to call the neuro’s secretary and tell her that the referral seems to have gone astray. About a week or 10 days after the MRI, get on the phone to the neuro’s secretary to find out when you might get the results. (Top tip: make friends with the secretary, if you can!)

I’m sure you know already, but just in case: type 2 oligoclonal bands are typical of MS, but are not usually found in ADEM.

I’m not sure why the neuro didn’t get at least your neck scanned before now, but if there are sufficient lesions in your brain to meet the diagnostic criteria, it’s actually not necessary to scan your neck or spine (for diagnostic purposes anyway). If you start on DMDs at some point, then it would be sensible to have everything scanned early on so there is a base to measure progress from, but other than that, MRI scans don’t tell us very much - the number and location of lesions don’t tend to tally very well with someone’s MS.

Sorry the appointment was such a non-event!

Karen x

Hi Karen,

Once again I am indebted to you for your knowledge and for some reason having the ability to keep me calm!

I don’t know anything about the OG bands so thanks for that. Also I will follow your advise as best I can.

Thank you so much for the support you have given me over the last few months, the kindness of a stranger staggers me!

Chis x

I’m glad to help Chis. The thanks spur me on! (I know, sad really!!)


Hi Karen,

Got a phone call today to let me know MRI booked for 30th January. I have to have injection to make the image clearer… I think. Thanks for your advice as without it I wouldn’t have pushed the hospital.

Chis x

Excellent news

The injection is of thing called gadolinium. It shows where the blood brain barrier is breached so shows up lesions that are actively forming.

Read this recently:

  • ADEM is more common in children. MS is more common in adults. (Both occur in at ages.)
  • More women have MS than men. ADEM is 50/50.
  • Most ADEM patients have a recent infection.
  • Headache, vomiting and encephalopathy are common in ADEM, but not in MS.
  • Multiple symptoms at the same time is much more common in ADEM.
  • Oligoclonal bands in CSF (a positive lumbar puncture) is much more common in MS.
  • Periventricular, corpus callosum and white matter lesions are more common in MS, but basal ganglia and thalamus lesions in ADEM.
  • ADEM lesions resolve at least partially over time whereas new lesions occur in MS.


Karen x

Thank you, what would I do without you!

All that seems a bit scarey. How do you go about finding out what sort of lesions they are? Should I request a copy of the MRI report, can I even do that?

I am going to the Walton Centre in Liverpool which is supposed to be excellent so fingers crossed!

Thanks again for the great advice, now that I know the date I can let it lie and get on with just enjoying my little ones at christmas.

Chis x

If I were you, I would do precisely what you said in your last sentence: let it lie and get on with enjoying Christmas with the little ones :slight_smile:

What will be will be!

I’ve heard that The Walton Centre is really excellent, so I’m sure they’re on the case. The time to start asking questions about lesion locations etc is if they aren’t being straight with you, or appear to be dithering or something. You can always ask for a copy of the MRI and the report if it’s needed, but hopefully it won’t be. For now, let the experts worry about it though. Christmas with the kids is WAY more important :slight_smile: