Working diagnosis

New diagnosis and before diagnosis
1

Hi,

Just joined this form today and looking for peoples experiences of ‘working diagnosis’

I had an episode of optic neuritis in Nov 17 and Im fairly sure Im at the beginning of another episode (although it may be residual symptoms from last episode although im not convinced!)

My MRI showed demylenation of optic nerve and apparently 2 lesions in the brain. Im now scheduled for a further MRI with contrast of brain and spine. They have also referred me to Speech and language as i had an episode of swallowing difficulty x2 in 2015 and 2017. On refection i also had a period of possible optic neuritis in 2012 but it was assumed to be viral and i didnt really link all these things up until recently!

So they have given me a working diagnosis of MS unti they can rule out mimicing illness ie lupus and once they get the second set of scans. She also started talking about the MS nursing team and disease modifying drug treatment.

I guess my query is has anyone been given a working diagnosis and not subsequently been diagnosed or should i assume by the level of detail and referrals that they are fairly sure and looking to confirm diagnosis rather than rule it out. Does that make sense?!

Grateful for any advice and guidance from those who have been through this process.

Rachel

2

Hello Rachel

Welcome to the forum. Sorry you’ve had cause to find yourself here.

I’ve not had that experience, but I am fairly experienced at this MS malarkey. It does sound to me that your neurologist is really pretty much convinced it’s MS. There are certain signs which if present on a neurological examination suggest to the neuro that they are dealing with MS as opposed to a different diagnosis.

Plus, the presence of demyelinating lesions on the optic nerve and in the brain as seen on MRI (I assume these lesions are in the right place and are of the right type to be signifying MS), added to your symptoms would also make the neurologist fairly confident.

They have to rule out other potential disorders, before definitively diagnosing MS, but if you were not to get an MS diagnosis, I would be very surprised. Sorry.

It’s really very rare that someone comes on here and says, ‘these have been my symptoms and my test results, do you think it’s MS?’ and someone like me says ‘yes probably’. Normally we ere on the side of caution and say that we can’t do the job of your medical professionals. But it sounds to me that your medical professionals have in fact 99% made up their minds.

But equally, it’s not over till the fat lady says it’s MS, or something like that. So (mixing metaphors like crazy), don’t count your chickens before they turn into ducks.

While you are waiting for the next MRI and appointment with the neurologist, be careful about where you look for information about MS, the info on this site is reliable as is the info on the MS Trust website. Try having a look at https://www.mssociety.org.uk/about-ms/what-is-ms for general information about MS, and https://www.mssociety.org.uk/about-ms/types-of-ms for info about the different types of MS. (I would expect that from what you’ve said, if it’s MS, it’s the relapsing remitting kind.) And for info about disease modifying drugs (DMDs) try MS Decisions aid | MS Trust

Try to stay positive. You are at least in the position of having a whole load of DMDs now available. So if you are diagnosed with MS, you’ll have the tools to hopefully reduce the number and severity of relapses. So your life will continue after diagnosis.

And feel free to come back here for help, advice, support, or just a chat with people who understand.

Sue

3

Thank you - it wasn’t a huge surprise and I don’t think generally health lead you in a direction unless they’re fairly confident. so in an odd way it’s better as I know people go for years waiting. Thank you for the advice I am staying off Dr Google! x