I’m Rosie, a newly diagnosed lecturer (she/her) in the UK and I wanted to say hi, and meet some nice folk, but also pick everyone’s brains on a couple of things.
First of all, it’s probably RR, but I was initially misdiagnosed with FND and had to really fight for the scan and lumbar puncture. Both came back showing active MS and over 2 scans another lesion appeared. This same neurologist, after telling me FND in 30 minutes, then telling me it was PP ms from results, has now declared it is RR. Thankfully I’m seeing someone else now, but the multiple changed/mis-diagnoses have really sent my head spinning. However it got me wondering if anyone else has had a similar experience and how they dealt with any emotional fallout/mistrust issues in care, as well as those unpleasant what-ifs, if it hadn’t been picked up?
The other odd thing I wondered was if any of you guys are multilingual, and have you have any experience of it affecting your languages unevenly. I can have brain fog in english but my Spanish is fine, or be unable to keep languages from muddling together even in v strictly monolingual situations, but then sometimes, after years of fluency, I can barely speak spanish or portuguese at all. Is this an MS thing? It started about 2 years ago after a period of wild fatigue (first symptoms were 5 years ago).
Anyway, hope these questions arent too wild. Hope you’re all keeping well
I feel that I have issues with cognitive parallel–processing, and wonder whether your multi-language difficulties spring from a similar source?
MS can be very hard to diagnose, so your medical advisors aren’t necessarily completely useless – you might just be a very hard case. On the other hand of course they might be completely useless. In any case, I’m very glad that you’ve got a new one with whom you can make a fresh start.
Nothing wild about your questions but you are living proof of how hard MS and other closely related conditions can be to diagnose.
I’ve had my own fun & games with misdiagnoses. Originally diagnosed with something that could be rectified with an operation if it became serious enough, I developed Progressive MS 5 years ago (retrospectively) and have consequently deteriorated significantly but was only first diagnosed with MS at the start of this year. The head game was “considerable”, going from something curable to something that was not. Nor could I blame any one person as I’d been passed around so many. Plus, what good would it have done? There’s no way back.
Actually you’re fortunate: they’re still not sure exactly what you’ve got, so are still digging around. Hard to see how you could be going from RR or CIS to PP (not SP) - but I’m not a Doctor…
Keep pushing them. If they’re uncertain, jump on them! To the MS team you’re a case number, not a person, and to them, it might be convenient to play “wait and see”.
Hi Alison, that sounds really interesting. What is multiple parallel processing? I’m still learning neuro terminology
Haha, sadly this neurologist was just a classic bumhat, misreported things I’d said, left out symptoms in the letter, told me the mri would be a waste of resources, and claimed to have done tests they hadn’t. My GP lodged a complaint but good gravy it was an emotional few weeks. But now I’m free, just with that lingering herumph.
Thank you so much GCCK. That is really reassuring to know and a better way to think about it. I can’t imagine the headspin of going from curable to MS though. You have my solidarity. I will definitely keep pushing them
Oh, it’s just that if I try to hold more than one thought in the front of my mind at once, my brain slows down like a PC with too many windows open. In a well-stocked brain like yours that has multiple language options at its finger-tips, so to speak, and then your brain is suddenly having a hard time dealing with choosing the right word in the right language super fast, something similar might be at work. But I’m a complete lay-person here and have no knowledge of how the brain works with or without MS beyond my personal user experience.
You sound well rid of that neurologist, by the way.
Hi Rosie, I recognize a lot in your story, but I suppose most people do for which reason they ‘consult’ this website. I went from first diagnosis of ‘RR’ at the age of 40+ (I am now 58… help!!:), followed soon by ‘SP’ and ‘PP’… Some explanation here… I originate from The Netherlands and I emigrated to the UK in 1995 to be with my english girlfriend now wife. I have had medical issues which can now be related to ‘MS’, since my first attack at the age of 11… I have had issues with my eyes, bladder, fatigue, footdrop etc etc, but I was more or less told at the time (because of the stressfull situation these symptoms caused) that ‘mental instability’ was to blame (let’s say they were partly right for the wrong reasons, whereby I mean the stress it caused because of ‘the unknown’!.
I emigrated to the UK at the age of 32 which meant that I had to sort of ‘re-build’ a medical history. A much more alert GP in the UK had suspicions after my legs suddenly temporarily gave up, and sent me through to a neurologist (a Mr Martin) and the rest is history… RR to start with (…), SP, then PP because I realized I DID have attacks/relapses albeit not many… Still, it became obvious that the MS was ‘progressive’, with ‘fatigue, bladder issues and clumsiness’ being the biggest culprits (I still have problems with the expression ‘progressive’ as it sounds in my mind like something ‘positive’…).
Bla bla bla, I had to give up working in the end (now about 10 years ago?) as we also have a daughter-with-severe-learning-difficulties (now ‘in care’) and my wonderful wife who also had had (and has) medical problems due to a stroke after the birth of my daughter… (and a very healthy son now -trying to- studying in Bristol…, COVID!). And ‘the rest’ regarding other issues (dutch family relations going ‘plop’ because of non-visiting, making room for nasty gossip by ‘new members’, selfish ignorant -false- neighbours, ‘abuse’ by previous carers of my daughter witnessed by myself!..etc etc…) will be in my future book! (mainly in english but partly dutch, this to sell as many as possible to cover the costs of ‘family-and-other complaints’ because of my ‘open-ness’, read ‘honesty’…and and and…).
Don’t worry Rosie, I’ll stop! (for now…). I think it’s important to exchange ‘stories’, as we all need an outlet!, especially when ‘cut off’ from society… (well, that’s the way I see it because of my non-average personal circumstances…). Take care Rosie, ‘Ik ben uitgeluld’… (a dutch collocal expression for saying ‘I’ll shut up now’…:)… Take care, especially under today’s circumstances, for all readers of my blabla…:)?
How impolite!.., regards Jos
That does sound like it. Sort of like if my brain is a train at a crossroads and another train crosses first and then the brain train cant get its breaks off again. Something distracts it and suddenly ‘we dont speak that language right now, please come back later’ . That’s so interesting. I had no idea there was a name for it. Sorry if I’ve misunderstood though.
Jos, wow! I’m so sorry, that sounds like a really difficult journey, and I hope you’re all okay and all that can get better does, despite it all. I promise to buy the book if you tell us the name when it’s out:)
Thank you for sharing stories, i wholly agree about sharing them also it’s sort of nice to know the journey isn’t always smooth, even though it would be beautiful if it were smooth as glass for us all forever
I do talk a lot don’t I Rosie…, better out than in!.., or is this foreigner getting confused with something else? Anyway, I will never qualify for trying to be funny! Take care.