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Waiting for MRI...

Hello all,

I am a 35 year old male in London. About 6 weeks ago, noticed a bit of a smudge on my glasses, took them off and realised there was an issue with vision in my eye. As if I had been staring at the sun a bit too long.

I went to the opticians, who sent me to Moorfields hospital a&e as they suspected a detached retina, which the Dr diagnosed as Optic Neuritis, where they made an appointment in the clinic for a couple of weeks later.

The clinic couldn’t see too much, so sent me to the Neurologist where they took a blood test and have also sent me for an MRI. I have actually been selected to take part in a clinical trial for a ‘Clinically Isolated Syndrome’ and that will be this Tuesday

The possibility of MS was mentioned, and to be honest this has hit me really hard. Furthermore I hadn’t been experiencing any other symptoms until yesterday when I had a shower and it felt like both my arms were sunburnt. This still persists this morning and this has really got me worried as this appears to be another MS like symptom.

I do have a sore back, but have had one for many years as the result of a disc operation when I was a lot younger

So, at the moment I am pretty scared, I am a single man living in a shared house so it is not like I have a great amount of people around me to help or vent at.

I know in reality I can’t make any predictions as to MS until the MRI results but currently feel that this is the road I am going down and I feel pretty terrible about it. I don’t feel I can tell my family as I know they will get very upset.

Thanks for listening and I would appreciate any advice

A

Hello A

So has the neurologist diagnosed you with Clinically Isolated Syndrome (CIS)? This diagnosis could be a one off event, or an initial relapse as part of MS.

It does sound as though you feel very alone with what has been happening to you over just 6 weeks. Hopefully the neurology department will be more supportive than they seem to have been thus far.

Do you know what the clinical trial comprises of? Will you be starting a disease modifying drug as part of the trial?

I would expect that you’d be contacted (or given the contact details) by an MS nurse. You should find that s/he is a massive source of information and support for you.

Equally, you now have this forum. The members try to support each other and to share experiences and ideas. So feel free to open up conversations with us as you need.

Best of luck.

Sue

Hi Sue, I believe the trial is to compare the effectiveness of MRI scans in MS prognosis, and there won’t be any meds involved I was kinda hoping this would be an isolated incident, but now I have two symptoms and this has me very worried

Two symptoms could still be the same event. Ie part of the same CIS.

So don’t panic.

Wait and see. I’m afraid that’s pretty much all you can do when you’ve been given a CIS label.

The picture might be slightly different after you’ve had the MRI.

Hopefully all will be fine, you’ll have had a scare, but no MS.

Sue

Thank you for your kind words. If you don’t mind, I will update the post on Tuesday? A

Do. You may not get any immediate feedback after the MRI though. So don’t be too disappointed if you have to wait a bit longer for results.

Sue

a little bit extra.

all depends on your taste in music but i liked it when the MRIs were noisy.

i’d imagine i was at a heavy metal gig and one of the radigraphers asked me later why i was smiling.

Ah yes, I have a follow up appointment in two weeks after the scan

A

I find the noise to be quite hypnotic and have almost every time fallen asleep. The radiographer often interrupts a nice little snooze by saying things like, ‘the next scan is two minutes long’.

I’ve often found the MRI to be a bit chilly, so it might help to wear comfortable, warmish clothes (that obviously have no metal in them). If it’s a scan with contrast, they will have to put in a cannula to inject the contrast dye. They’ll pull you out, inject the dye then push you back in for another couple of scans.

Sue

Hello,

Just thought I would give you a little update.

I received the MRI results this morning, and as it stands they found a lesion on my optic nerve, but not on my brain or on my spine. So for now they are happy to declare that ‘you do not have MS’ and this is a CIS. They are planning on having me in for some further tests in the following weeks, but for now I can breathe a little easier.

Thanks for listening

A

Excellent news. I’m glad to hear it.

Hopefully the further tests will go well and you stay healthy long into the future.

Sue