Has anyone had this before?? I saw my neurologist last night after all my tests have been completed. He said yes I do have Ms given the lesions and newest recent ones on my scan and my symptoms but because my CSF and spinal scans were normal I can’t have my official diagnosis until the MS has progressed!? I’m being scanned annually now then when deterioration shows I will get the diagnosis and start treatment. I’m not quite sure how I feel about it as I’d have like an official diagnosis but I’m aware they have to follow the McDonald criteria. He said k am and MS patient and should be reading on here and educating myself (which I already have). It’s so confusing!
Hello Doris, welcome to the forum,
You have actually answered your own question, and I think you realise it…
Meeting the McDonald criteria is essential, and until you meet it you’re in what is known as ‘limbo’. None of us here, or any of the docs, can tell you how long you will have to wait before you satisfy the criteria… if indeed you ever do. How long is a piece of string, eh?
Meanwhile, you are under a neuro who is being honest with you and keeping watch. I was in the same situation for, I think, nearly two years when I had the biggest relapse I’ve had, so my diagnosis was confirmed.
I was diagnosed with normal CSF which is not common, but I’ve met a few others on the forum in the same situation (I’ve been a member for about 10 years).
I know its frustrating, but I’m afraid you’re just going to have to wait. MS episodes and progression cannot be predicted. Meanwhile, try to get on with your life as best you can, and if you’ve any questions, you can ask your neuro or come here. We will share our experiences; however, the neuros are the experts.
Wishing you well,
(Gosh, six edits… my spelling gets worse)
Thanks Ben I suppose I just presumed that once you’re out of limbo, you even have a diagnosis or you don’t. It’s just strange to be told I have Ms but can’t officially be diagnosed.
You’re right though, I think I need to try and get on with it but it’s easier said than done. I know people get a
Diagnosis with a negative LP so I suppose I need to be patient.
Well, that is a puzzle, and it must feel very unsatisfactory - the neurologist whose area of deep expertise knows you’ve got it, you know you’ve got it, but the computer won’t allow you to have it. Bonkers, really. Ah well. At least it gives you a bit of time to get your head around it before it becomes official. I had much the same, 20+ years ago. I knew I had MS several months before my official dx, and I actually found that strange, limboland time quite helpful.
It meant that, when the neurologist and I finally did have The Discussion, once my next relapse arrived, there were no surprises. It gave me time to do a bit of thinking about how I was going to break the news to people, what it meant in all sorts of areas of life before the official ‘shit’s got real’ moment.
I think I just wanted some validation as to why I’m feeling the way I do and now it just feels like I still can’t tell people as it’s not ‘official’. Not that I want to make a big announcement etc but close friends have noticed things haven’t been right (I’ve been in a horrible depression) but I’ve not told them what’s been going on.
You might like to come consider taking those closest to you into your confidence. It can be lonely work, keeping it to yourself. You don’t need a neat and tidy dx to give yourself permission to do that. Even if you don’t know quite what to say, even if you think you’ll be a teary mess (which you will if you’re anything like me) that’s OK. Life is messy, and that’s what friends are for.
To be honest, I really do think your dr is saying you have ms, just not dx because of the Mac Donald criteria. My cfs test, proteins etc were all normal. My neurologist asked (herself) for a second opinion at Addenbrooks (one who specialises in ms ) who confirmed my diagnosis. All the best to you x I’m glad really she wasn’t ego driven, and good enough to have another neurologist look.
Hello I was in exactly the same situation for just under 3 years.
My first MRI found multiple brain and a couple of c spine lesions with demylination.
I was diagnosed with "probable MS "
My Neuro said it definitely was MS and it looked like I had it for a number of years.
He did say it proved dissemination in space but not in time and I would need a lumber puncture.
I was given access to a MS nurse straight away and annual MRIs after.
My LP found one band and as per the Mcdonald criteria this didn’t confirm dissemination in time so I still didn’t have a formal diagnosis.
I also have a sister who has MS and I knew this was what I had.
It wasn’t until my latest MRI found a new lesion that I got my formal diagnosis.
It is an uncomfortable situation to know what is wrong with you but feel almost like a fraud as you don’t have a formal diagnosis.
I got over that as my scans proved the damage already done and my symptoms carried on.
I told my family and close friends straight away after my very first MRI as they knew I was ill.
My formal diagnosis was totally expected .
I’m about to start a DMT.
I think if your Neurologist has said it’s MS then you should be prepared that it will eventually show itself.
Wishing you all the best and I hope you get some answers soon .
Thank you both so much for your responses to this. I’ve actually had another ‘relapse’ this year and suffered weakness and constant pins and needles in my left arm. My neuro could see the weakness so I’ve had another MRI last night of the head and neck with contrast. Weirdly I’m hoping there are more lesions as I’ve already made peace with the fact it is MS and I just want the confirmation now. I definitely do feel like a fraud without an official diagnosis!
It’s so comforting to know that others have experienced similar to me.
This is so encouraging to hear that you finally got your diagnosis. I have visions of me being 60 and still not having one (despite the name on here I’m 35) in so pleased for you that you’ve managed to start some treatment.