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What does “getting a diagnosis” actually mean?

I had Optic Neuritis about 8 weeks ago and then an MRI which shows multiple lesions. The letter I’ve seen (to another consultant) says that the MRI is “in keeping with a diagnosis of MS” and then goes on to mention the possibility of starting DMTs should be discussed “even at this stage” . Does this mean I have a diagnosis of MS or is something else needed to confirm it?

do you mean that you read the letter addressed to another consultant? did your consultant know you read it?

it could possibly be the case that the 2nd consultant is an ms specialist and the first consultant is passing you over for the DMT.

to be honest i’d say that until you are told to your face that you have ms or if you receive a letter saying so then you’ll just have to wait.

that was a very cheeky peek!

I always get copies of any letters sent about me. So I would imagine it’s one of those - the neurologist is referring you to another more specialised neurologist. Or s/he’s a more junior member of the neurology team writing to the Consultant for his/her information.

I’d actually take it as a diagnosis. Multiple lesions on the scan ‘in keeping with a diagnosis of MS’ implies pretty strongly that you have MS. Starting DMTs ‘at this stage’ would be written that way because often they treat the first symptom as a Clinically Isolated Syndrome (CIS) and don’t start the drugs until and unless you have another relapse. But because you have multiple lesions, they don’t need to wait to diagnose MS. You’ve probably been having fairly silent relapses for some time for the lesions to build up. They use a protocol called the McDonald Criteria for diagnosis: https://www.mstrust.org.uk/a-z/mcdonald-criteria

Once you have the next appointment, I suspect it will outright confirm the diagnosis and be a meeting to discuss the drugs available. You could get a head start by looking at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This details all the available disease modifying drugs (DMDs aka DMTs). It may be useful to be aware of the different drugs and have some idea about what you might prefer (ie self injections, tablets or infusions). The neurologist will of course have their own ideas and could for example prefer you to be on an infusion drug if your MS is ‘more active’.

Sue

Thank you for your replies. There was no secret snooping involved! I get mailed a copy of all consultant letters that go to my GP and in this case the other consultant. It was noted in the letter that the consultant I have been referred to sub specialises in MS so I assume this is why I’ll see them next. I feel like I have been given a diagnosis but it isn’t half confusing… the neuro I saw certainly eluded to it (and was perhaps the least reassuring man I have ever met) while the initial doc I saw at the eye hospital prior to neuro or MRI almost laughed MS off as being a ridiculous possibility and made me feel like I was being neurotic. I don’t know why I expect someone to say it outright as ‘YOU HAVE MS’ when I know from what I have read on here it is a much more complex and individualised process than that. I do however, value the opinions of folk on here who have much more knowledge and experience than I do and I will definitely read up on the DMDs before my next appointment to make sure I am informed as possible.

As the patient, it’s not unreasonable to hope to be the one that’s told first about the diagnosis, but in some settings, it seems to fall far short of that. I was told to my face, but the first letter I saw that confirmed it was to my GP. I’ve worked in healthcare for years. The patient is always the priority. If anyone forgets that, they are falling short of what they should be doing. Best of luck xx