Please!! Asking for Help again.

New diagnosis and before diagnosis
1

Hello everyone

What an amazing forum this is. It’s been a massive support to me over the last week. I’m looking for help (again) it’s been a whirlwind of a week in hospital with a false reading of my MRI scan by an Orthopaedic doctor as stated in my previous post.

Can anyone shed any light on my MRI scan? I have to wait 6 months to see a Neurologist and I am seeing everything through anxious eyes at the moment and can’t concentrate. The doctor has printed off my MRI for me can anyone help me…it states…

Patient has new neurological symptoms no trauma, bloods done, requires MRI of head demyelination protocol query MS.

MRI HEAD:

No imaging of a mass lesion.

Single white matter rounded hyperintensities inferior right frontal lobe and posterior left frontal lobe insufficient to suggest demyelination.

No significant abnormality elsewhere in the brain, brain stem or cervical cord.

No evidence of optic neuritis or orbital pathology.

I thank you all in advance.

Sami x

2

Hi

I am by no means an expert, but a report that says ‘no mass lesion … insufficient to suggest demyelination … no ON or orbital pathology’ sounds like your brain MRI is negative for MS type demyelinating lesions.

This in itself doesn’t mean 100% you don’t have MS, but it’s quite suggestive of that.

Have a look at McDonald criteria | MS Trust This spells out the usual criteria for a diagnosis of MS. As you can see, it relies quite heavily on clinical evidence, so MRI data is essential. Saying that though, you’ve not had an LP or a spinal MRI. So basically you can’t completely rule it out. But it (imo) is a bit less likely.

Given that the neurologist is unconcerned, and has given you a clinic appointment so far ahead seems to indicate that MS is really not going to be the diagnosis you end up with.

I’d expect your GP to be sent a letter by the neurologist into which you’ll be copied. You may well get some more concrete answers from that, possibly the result of the LP at the same time.

Hopefully the symptoms that took you to the hospital will gradually recover (maybe some already have?) and you’ll be discharged by the neurologist in 6 months.

Sue

3

Thanks so much for your response Sue it means a lot. I’m in awe of this site.

I had the wrong information given to me by an Orthopaedic doctor who came to look at my finger whilst I was admitted in hospital who stated there was demyelination on my scan which then followed by two doctors profusely apologising stating she had misread my scan, this has now been escalated to the clinical director of the hospital. It was very distressing.

I still have severe pain behind my left eye and tingling. They have put me on gabapentin.

From what I can understand MS lesions have to be in specific areas of the brain which is why I was concerned about the two white spots in my frontal lobe. I’m only 33, is this something i need to be concerned about or is it a problem that I may have in the future.

4

Brain scans are utterly confusing things. I watched a neurologist comparing this years scan with last years the other day. He was pointing at lesions, saying ‘that’s new, oh no it’s not!’ ‘That looks like a lesion, oh maybe not’. ‘That one appears on the older scan’, ‘oh and that one’. ‘Ah, yes, that one’s new’. ‘That one’s not.’ ‘That’s new, very tiny though.’ (Etc, etc!)

I said, ‘blimey that sounds like I’ve got loads of lesions!’ He said there really weren’t that many (seemed like dozens). This was apart from the spine, where I’m pretty sure I have a good few more. The positive thing was, ‘there’s no sign of dementia!’

It really is pretty amazing how they can identify what is, and what isn’t a lesion. What spots are just spots, and what are more problematic.

So, from a completely untutored, know nothing viewpoint, if there was something to worry about, I think they’d be calling you for an appointment sooner than 6 months.

Don’t forget, I am a scientific numpty. I know literally nothing about which I am writing. It’s an amateur opinion. What you’d be best doing is phone the neurologists secretary and ask whether a letter is on its way to explain what’s happened so far? Once you and your GP have received a letter explaining the results of everything they’ve tested for, you could see your GP and see what s/he thinks.

Meanwhile, all I can suggest is try not to worry about it. The neurologists really do know their stuff, and were there anything thus far to be concerned about, they’d be doing something about it. I do understand how hard it is to switch off the scary stuff going on in your head, and don’t we all wish we’d get straight talking from a neurologist exactly when we most need it!

Sue

5

You may think your a scientific numpty Sue but your comments are really helping me. No I agree I think if there was anything too worrying they would have me in before 6 months. I was just concerned about the white spots but I suppose being rounded and not suggesting demyelination I cannot worry myself sick for 6 months.

Spoke to the Neurologist secretary today she said it has been triaged by scan and it’s not classed as urgent do it will be up to 6 months and told me to try and not worry. And it doesn’t seem I will be receiving a letter from them until it’s for my appointment.

What I have received though for the beginning of January is an appointment for my field test with the Opthamologist who saw me who said I don’t have optical neuritis. He wanted to see me back with my scan results anyway.

I haven’t had my lumber puncture results well I’ve had the first half which suggested no infection but not the second half.