suspected MS

[megrob]

hi, can people tell me what their experience was with getting diagnosed with MS. how many MRI's this took and in the space of what time. Did their MRI show leisions on the brain? did this mean they had to have a 2nd MRI to see what the changes were before any treatment/medication/diagnosis given??

I had my first MRI in the December just of my spine, didn’t get the results until the following March when I was told the MRI showed white matter lesions/demyelination. Had two follow up MRIs in April (brain) and October (brain and spine with contrast) and eventually diagnosed the following December on the basis of progression and active lesions shown by my MRI in October - so over 12 months from initial scan to diagnosis for me. Then 9 months from diagnosis to starting DMT - it’s a long game.

I am really shocked at this! You had to wait until March for results of an MRI that was done in December?

I've heard of long delays for results of scans that were clear, but for one that actually showed some pathology, well that is very poor.

I'm following this thread with interest.

I'm also wondering this. I've been back and forth to the doctors for around a year with symptoms and being told it was anxiety. Now I've finally being sent for an MRI after seeing a neurologist and my symptoms getting worse. Says 6-8 week wait though. It's hard when you just want to know what's going on with your body x

Thank you kindly for your response. Can i ask what was the reasoning behind having 2 brain MRIs in April?

I have suspected MS from leisions found on a brain scan MRI. told to wait 6 months from now to see what the change is where i will be offered a 2nd MRI of the brain. Told by neurologist they dont know what their looking at to give a diagnosis/label until they have seen what the changes are in 6 months time. worried this could be something more sinister that their suspecting but not saying?

told this could be a CIS which is a clinically isolated syndrome where patient presents with leisions on the brain but has little to no symptoms at all. But that they wont know and cant label this as CIS until they see what changes there are in 6 months. Neurologist said he doesnt like how my scan looks at present and these leisions are significant enough for a 2nd MRI as their is activity going on in my brain but they dont know what it is or what to call it until they have seen the changes in 6months time. he also said other diseases mimic my scan that they need to rule out before giving this a diagnosis of CIS....

is it just me or should i be worried about anything else.... is he trying to warn me about something which he cant say now?

@Anon992

I paid privately for an MRI because my GP wasn't taking me seriously. It showed suspicious brain lesions, but not enough to make the diagnosis there and then. This would've been summer 2019. I then had to wait ages to be referred through the NHS, and had a second MRI and lumbar puncture on the same day in summer 2020 (!). Annoyingly, the second MRI showed enough new damage that the lumbar puncture wouldn't actually have been necessary, but it was good to have double confirmation.

If you want to know for sure, I'd push for a lumbar puncture (it's not that bad). If it is MS, early treatment makes a difference.

The key is in the name - multiple. They need the scans to check for multiple activity changes and legions over a length of time. The doctor isn’t holding back, they need the evidence to prescribe correctly and treat.

I had an MRI as part of a research study, as a healthy volunteer. My lesions showed up on that. Had to go through the hospital, who rescanned me as they couldn't open the university images. And it was confirmed. It was a bit of a bombshell. But I'm glad it happened that way. As when it began to cause issues around 18 months later, I was already in the system.

Also, check out the McDonald criteria. Again, personally from experience, if you have a choice I would definitely recommend trying to get more evidence from a lumbar puncture compared to waiting for more MRI lesions or a clinical relapse.

I refused a lumbar puncture, as I couldn't see what it would add to the picture. The consultant agreed, and as I've assisted with many LP's at work. There was no way I was having o without a very good reason. Had several types of treatment, and I've done really well.

Well, I wouldn't choose to have a lumbar puncture just for extra info if all the clinical and imaging evidence was already enough to diagnose MS. But in a situation where the alternative is watching and waiting, I definitely would recommend it.

There is a definite consensus now that early treatment equals better results. In the clinical trials for ocrelizumab, they noticed the patients who started the drug just two years later were in a worse position at the 7.5-year follow up.

That said, the OP might not have MS, and fingers crossed for that. Worth pointing out too that MS these days is very treatable and not by any means the end of the world.

so my neurologist said he wouldnt twist my arm to get a lumbar puncture as it isnt going to give a yes or no answer at this moment. apparently i have 1 definite leision and 1 faint leision which they want to keep an eye on in 6 months time using mri. it is the faint 1 that is worrying me in case it ends up being something sinister

other than the leisions that were discovered by accident, they thibk i may have had 1 flare or 1 episode of attack of ms symptoms?

worrying this 1 faint leision is something else and their not saying just yet until they see a change

I lost my vision and could walk quite suddenly over Xmas 2019 … obviously they quickly check brain and spine. By the January I was diagnosed and started treatment April 2020
my sight came back after six weeks and by the March I was walking again.
treatment had been brilliant. Like my consultant said…
it’s a chronic illness that’s not treatable to cure but can be managed very well these days and that’s so true.
mine was very quick clearly but I’m sure you wouldn’t want the reasons why !
I had 13 lesions altogether.
recent mri was November, no results dues for a while with backlog.
good luck !
if your diagnosed feel free to private message me. Oh and get your vit d up ! Xx

Clearly couldn’t not could walk

When I was diagnosed in 2012, you had to have four relapses in a year to qualify for treatment. I believe now they are giving the heavy duty stuff earlier on, to stop the damage.

Given that the lesions were discovered by accident I assume you haven't had anything like an MS relapse that you know of? White matter lesions can be very common (dependent on age, and sometimes caused by things like migraines) so actually not necessarily as worrying as it can sound. I don't think it seems like they suspect anything worse than MS either.

If your doctor isn't suggesting an LP then best thing to do is to forget about it, let go of the stress, and let them keep an eye out with future MRIs.

As another poster said, feel free to message me with any MS-y questions too

Yes that’s right .. now they put you straight on treatment with one serious flare up, as research proves it helps hugely.
hope your managing yours ok too !

Your path is sounding very similar to mine, I wonder if we had the same original Neurologist, who was absolutely fabulous btw.

This was my experience, saw GP with symptoms, urgent referral, saw neurologist, had MRI, head, cervical and whole spine dx with transverse myelitis, told he thought it was first presentation of MS, classed as CIS, referral to MS nurse. Two years later exactly, further relapse, head MRI, dx with RRMS. My neurologist ruled out other diseases that could have been present alongside.

Good luck OP, I know what a worrying time it is.

i just want to say thank you so much for all your responses - it is very much appreciated.

@Roselilly36 our situation does sound very similar. these liesions found were incidental from a brain mri. GP rang to tell me about the findings. then i had to wait 7 weeks to see neurologist were i thought it would simply be a yes or no answer as to whether i have ms. but it wasnt that straight forward. they basically said they wont know until they see a change on the brain on my 2nd mri in 6-12 months time as to what this is/diagnosis. oh and that other diseases mimic the scan.

do you know what other diseases they ruled out for you? x