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When does it become 'official'?

Hi,

I recently had an MRI on my brain and was told yesterday that the scan showed signs of repeated inflammation which led to the conclusion that I had the Benign variant of MS.

However, my consultant’s going to be arranging further tests including a lumbar puncture, blood tests and something to do with the electrical signals in my brain. So I’m kinda confused at the moment. Do I have MS, or are they still not sure? I don’t want to mention the diagnosis to friends, family, my employer, and DVLA until it’s sure because I don’t want to have to turn around in a few weeks’ time and say ‘Oh wait, nope, false alarm’.

So I’m really not sure. Should I wait for further tests to be done before I say anything? Do the extra tests mean they’re still not sure?

Hi there!

I think your consultant is being cautious at the moment and is rightly referring you for more tests - the results of which may provide further evidence to back up his suspicion that this may be MS.

Eww! many of us have been in the position of ‘to say or not to say’ and I’m afraid it’s very much up to you whether you feel you want to mention MS or not!

Once they have ruled everything else out I was told that ‘Possible MS’ and ‘Probable MS’ can actually be a ‘diagnosis’ - one they often use while waiting for further evidence! These are very typical ‘Limboland Terms’ I’m afraid.

I would think it’s good to let your friends and family know what’s going on with you - be straight and try to explain the position you find yourself clearly - making it plain that this could be a false alarm.

You don’t need to say anything at all to the DVLA at the moment!

If your driving safety is compromised because of your symptoms you simply don’t drive and you need to speak to your GP about meds etc

Work is a tricky one! I told my immediate boss - who was awesomely supportive and got me through some awful times - BUT once it went higher up the ranks I had the most negative unsupportive, discriminatory response/experience ever - i.e. rather rapid redundancy! Something they knew would be very tricky to do once I had a definite diagnosis.

So it’s very much up to you but in certain circumstances I would be a little more cautious!

Hope this helps a bit! xxjenxxx

Most neuros are not willing to give a positive DX untill they are pretty sure what you have got. And the other tests are just a meens of confirmation. Oh and the electric brain thingy is called an EEG personally my least favourite test that was done on me just because of the weird sensation that it gives. Most people tend to worry about the old lumbar puncture but I promise the thought is a million times worse than the actual procedure and the docter who did mine caught the nerves in my spine. Try not to worry your self too much and I hope they confirm one way or another for you not knowing is not fun at all