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Is everyone who is diagnosed with rrms offered dmt?

Hi everyone,

So after 6 years of going backwards and forwards and seeing 2 consultants and 2 registrars my last registrar is convinced they missed a big neck lesion, which added to my episode of optic neuritis and another “one-lesion-is-normal” lesion means I meet the criteria for ms. I’ve had a third head MRI today and they also looked at my neck this time (it wasn’t specified previously which is why he thinks they missed it). Basically it’s to confirm the lesion is there and check for any new ones. I don’t want to get ahead of myself but I’m assuming it’s still there as I have lehmittes currently and have for the last 12 months at least, but are we all offered DMT if we’re diagnosed with relapsing/remitting ms or are there some occasions where they may offer you nothing? I want to be able to go to my appointment armed with al the right questions because I never think of them in time, hence why I’m asking this here, so want to do some research.

Thank you for reading.

Hello

These are the current ABN prescribing guidelines - copy and paste the link. Print it off and take it with you.

http://pn.bmj.com/content/early/2015/06/20/practneurol-2015-001139.full

Thank you for replying. I’ll try and make some sense of it all! Thank you.

Hi,

Im sorry im of no use to you regarding treatments available as im still waiting for a diagnosis. I was wondering how could a large lesion be missed. The reason im asking this is i had a cervical mri scan in sept 2015 and there were no lesions mentioned, however they were not looking at the time for ms. My new neuro says i have a lesion in the neck area even though he does not have any mri evidence to back it up…he is currently having a look at those images for me and says he will be looking for very different things…

Thanks Christine

To be honest having seen it I don’t know how it could be missed. The registrar said that because my MRI’s were both previously of my head they may have not looked at my spine and just focused on my brain-it’s the very top of my spine so caught in the image. He said each registrar may have just looked at my latest scan and thought it was an artefact, but that it’s probably unlikely that’s the case as its present on both scans. So this time I’ve had a head scan and cervical spine scan (the latter of which I haven’t had before) using a different scanner. Apparently if it’s still there we can make a confident diagnosis.

I think that’s the problem, they look at a specific are for a specific condition so miss things that are unrelated. I hope you get it sorted.

Neuro is sending me letter and he wants to see me again…getting nearer to whats going on…i hope.Is you diagnosis likely to be RRMS?

I think so. I don’t think it’s progressive, I’ve had 3 episodes of paraesthesia and returned to normal, just a slight loss of sensation on my left side, and lhermittes has always gone away after 12 weeks or so until this time which is why I was referred back. My sight returned to near normal too but took a few months because I went through ophthalmology instead of neuro and they said steroids wouldn’t effect the end result so said they weren’t always worth it if the symptoms are bearable. I would definitely take them if it happened again though because I have a very active toddler now! You just feel like you’re going insane when they tell you the symptoms are just ‘one of those things’. I actually thanked this registrar because I felt like I was getting to the bottom of it all and wasn’t making it all up. Its just a waiting game now.

I suspect that ‘artifact of the scanning process…blah…’ can at times be doctor-speak for ‘Ooops!’.

Alison

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I suspect that ‘artifact of the scanning process…blah…’ can at times be doctor-speak for ‘Ooops!’.

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Spelling ‘artefact’ wrongly is another ‘oops!’ - mine, I’m afraid.

A

I spelled it wrong too so I wouldn’t have noticed! To be fair this last registrar was incredibly thorough, did tests on me that 4 others haven’t, so I hold a little hope that there may be something more to it this time instead of getting the brush off.

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You spelled it correctly and in English, Jessica! I used the US spelling by accident. As if it matters either way! But when there is serious and worrying stuff going on, it can sometimes be a welcome distraction to divert attention for a moment to such trivia. :slight_smile:

I hope that your thorough registrar builds on his/her good start and gets to the bottom of things for you.

Alison

Thank you Alison, and thank you all for your replies. I don’t know what I expected but it feels like there is a lot of support here.

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