Awaiting Consultation/Diagnosis

New diagnosis and before diagnosis
1

Hi all,

I had a look through the posts on this forum, having steered clear of all of the information on the internet through fear of scaring myself to death, and felt compelled to write my own situation on here. It looks like a very sensible and reasoned forum. I hope I’m continuing along the same vein.

I’m awaiting a consultation very soon following an initial MRI scan - see below. This period of limbo is horrible.

There seem to be instances of people going years without diagnosis, which would be my worst nightmare, or getting almost immediate diagnosis. I have had various symptoms for over a year-and-a-half (I only know this looking back) but the impact of the symptoms were not impeding me particularly as I was working around them thinking it was just me. In hindsight, I was struggling badly, mostly mentally rather than physically so the sooner I get a diagnosis, the better. My symptoms include pins and needles in extremities, muscle ache, lethargic feeling, dizziness, memory loss, loss of balance, head pains, uncomfortable sensations … all of the physical symptoms occur down the left hand side of my body. The intensity for each of these changes on a daily basis.

Is there anything in my symptoms or MRI results that point to anything else other than MS? My MRI scan results read as follows:-

"MRI Head

Demyelination protocol

There is no previous imaging available for comparison.

There are numerous predominantly ovoid T2 hyperintense lesions involving the periventricular/deep and subcortical white matter. Note is also made of juxtacortal lesions involving the right superior frontal gyrus and the posterolateral temporal lobe on the right. There are subtle tiny T2 hyperintense lesions involving the body of corpus callosum.

Further lesions involving the ventrolateral aspect of the right midldle cerebellar peduncle and the medial aspect of the left middle cerebellar peduncle extending to the superior cerebellar peduncle are also noted. There is a possible lesion involving the cranial aspect of the cervical spinal cord at C1 level.

None of these areas of signal change demonstrate diffusion abnormality and no pathological contrast enhancement is shown.

The speck of T1 hyperintensity within the left paramedian aspect of the quadrigeminal system would be in keeping with fat within the subarachnoid space (normal variant).

Conclusion;

Multiple white matter, juxtacortical and brainstem T2 hyperintense lesions as described. The morphology and distribution of these lesions would be most in keeping with an inflammatory/demyelinating process.

In context of a clinically isolated syndrome, these lesions would satisfy the revised Mcdonald criteria (2010) for dissemination in space."

2

Hello and welcome

I commend you for your restraint in not going mad with google :slight_smile: You’re right, we’re mostly pretty sensible on here (with one or two exceptions :-)) and you can trust the information the MS Society provides, but there are a lot of crackpots out there so you are best not to browse too far and wide. The MS Trust is also very good though.

I’m not sure if you want the MRI report interpreted or not? What I can tell you, without doing the full interpretation, is that your scan is consistent with MS. This does not in itself mean that it must be MS because it is not the only condition that can cause this kind of result so what the neuro must do is consider the MRI report + your history and symptoms + your clinical exam results + the results of any other tests you’ve had done. (Some of the other things that can cause multiple areas of demyelination are vitamin B12 deficiency, ADEM and some genetic conditions.)

You might want to download the paper that outlines the diagnostic criteria for MS: Polman et al, Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. ANN NEUROL 2011; 69; 292-302. (This is why the radiologist has mentioned the McDonald criteria.)

The dissemination in space bit comes from the two main criteria for diagnosis of MS: dissemination in time and dissemination in space, which basically mean more than one attack and/or a gradual decline over time and more than one affected area of the nervous system. Both of these can be demonstrated with MRI: the time bit by seeing new lesions between scans or old and new lesions on the same scan; the space bit by having lesions in multiple areas that are typical of MS. At the moment, your MRI shows that you satisfy the dissemination in space criterion. The time criterion can’t really be shown with your scan because none of your lesions were “active” (this is the diffusion and contrast enhancement bit of the report). Some being active and some not would have shown that the lesions have developed at different times.

So where does that leave you. There is still a chance that it is not MS. Only your neuro can tell you this. If it is MS, then it depends on how long you have had the symptoms, whether you have had periods that have been (relatively) clear of symptoms and whether or not your symptoms have been progressing in that time. From what you’ve said, I think a diagnosis of probable MS or MS is more likely than CIS (clinically isolated syndrome, basically a one off attack of MS), but I could be wrong.

I know full well that this kind of info is bloody hard to digest. Please try and hold onto the thought that, while MS is not anything anyone would wish for, it really is NOT the end of the world. There are loads of excellent meds and other forms of support these days and life really can still be good.

Karen x

3

Hi Karen, thank you so much for taking the time to respond. It’s really appreciated.

With regards to interpretation of the MRI report, I think I have the gist of it, but I was wondering if there were any glaring clues left by the person that wrote it that would only be obvious to someone in the know i.e. the hidden message between the lines. If you see any of those clues, I’d be interested to know.

I failed to mention I had a blood sample taken and the results from that came back as absolutely fine. I suspect they were primarily looking at sugar/glucose/insulin levels at that point to eliminate diabetes. Funny how I failed to mention that seeing as it’s quite important but I guess that demonstrates just how much you can feel you’re in a tornado. Hence I keep a daily diary of events now.

I did look at the Mcdonald criteria, so I suspect that if I’m given a second MRI scan at my consultation, that could confirm everything, or not. Do you know if MRI results are immediately available during a consultation and is it standard practice to evaluate the ‘dissemination in time’ test during a consultation?

I’m assuming (please correct me if I’m wrong) based on your comments that it is possible to age lesions, and therefore see from one scan if there have been multiple attacks. If this is the case my one MRI scan, that was taken about 10 months after my biggest known relapse, could have confirmed the dissemination in time criteria too; but it didn’t. That’s interesting if I have that correct. I wouldn’t say my symptoms have necessarily got worse over the year, but they vary very noticibly over shorter periods of time.

Thanks for the final words of support. You really help a lot of us on here (including myself) so the biggest challenge for me at the moment is coping with the unknown unknowns right now rather than the symptoms of MS. Thankfully I’m not at a negative mental stage of the process at the moment but I’m sure that will come.

Other peoples’ experiences of the limbo state would be most welcome along with their coping techniques with the benefit of hindsight.

Thanks all and thanks Karen.

soon-to-be

4

Reading between the lines is purely opinion (and it’s an unqualified one at that), but from the way the radiologist has worded the report, it looks like he is strongly suggesting MS. Ovoid periventricular and white matter lesions are typical of MS, as are juxtacortical lesions. The corpus callosum is the major tract of white matter joining the two hemispheres of the brain. Lesions there are strongly associated with MS. You also have lesions in the infratentorial area (the cerebellum and brain stem). The McDonald dissemination in space criterion states at least one lesion in at least two of either periventricular, juxtacortical, infratentorial and spine so you meet this easily.

Referrals for MRI scans go in a queue and MS isn’t considered urgent so, unlike xrays, consultants can’t send a patient for one on the same day. The images are on the hospital system as soon as the scan has been done (there may be a slight delay if the data have to be downloaded to a different server mind you). The consultant can see the images immediately, but many are not experienced at MRI so they have to wait for the radiologist’s report.

Telling how old lesions are from scans is controversial without a reference scan taken earlier (and even then it’s not straightforward). Older lesions are more likely to be “black holes” (black spots on the T1 scan, but white spots on the T2 scan) - these are areas that have died. Older lesions are also likely to become less bright on T2 scans over time as the body partially repairs the damage, but it is not possible to tell these apart from lesions that are not as bright simply because of the way the images have been acquired. The easiest way to tell new from old lesions on one lots of scans is for some of them to be active, i.e. newly forming. This can be shown using contrast or diffusion imaging (which maps water flow - active lesions slow the flow). If you had some that were active and some that weren’t, it would be clear that some were new and some were old.

So the neuro can’t tell from the MRI if all of your lesions happened in one go or they are the result of more than one attack. This is where your history comes in. If it is clear from that that you have had more than one attack, then I can’t see that another MRI is necessary, but I guess the neuro might want to be sure. If you have had just the one attack, then another MRI is necessary as it is needed to differentiate between ADEM and MS. (Lesions tend to reduce in number over time in ADEM, but increase in number with MS.)

A lumbar puncture might be a sensible step, but the neuro may have all the info he/she needs already. (A negative LP supports ADEM and positive supports MS, however about 10% of MSers have a negative result so nothing is certain. People with CIS who have a negative LP are less likely to go on to develop MS.)

As far as coping goes, I went through the first half of my limboland experience in happy denial and the second half in acceptance that sh*t happens and it was my turn. So when MS was confirmed (after about 15 months), it was just ticking a box for me - I’d known it as soon as the words “probable MS” were spoken, months before. So no wise words I’m afraid :frowning:

Hth.

Kx