Hi, may I ask if everyone here with an MS diagnosis had confirmed brain or spinal lesions?
I am seeing a neurologist next week. I’ve not had confirmation of any lesions on MRI scan of brain so far. Thanks.
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Hi @jackie62 depends on what you mean by ‘confirmed’ ? 19 years ago I was told that I have ‘quite a few lesions’ in my brain but I’ve never had anything in writing until this year after my annual MRI scan when I had a letter to say that a new lesion had been detected
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Hi Jackie.
Mine began with what I was told was a couple of large brain lesions and some demyelination. By the time I was diagnosed, they told me that there was a couple of new ones. It’d be lovely if you don’t have to hear that.
Good luck with your appointment x
Jon.
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Thank you, did your initial diagnosis confirm lesions? I keep reading that the condition can’t be confirmed without them.
Thank you, I am getting to the point of frustration, I can’t go on like this.
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My diagnosis was 19 years ago and given at my first appointment with a neurologist. I can’t remember exactly what happened at that appointment although I do remember the neurologist asking me what I was seeing him for! I told him about my optic neuritis ( lost pretty much all vision in my right eye) and how that led to an MRI which , according to the guy who watched over it ( who was a consultant eye specialist but not a neurologist) showed that I had quite a few lesions on my brain ). The neurologist then looked over his files and presumably the MRI scan of my brain and said something like ‘oh right’.
From what I remember the neurologist then asked various questions, tested my balance and knee jerk reaction and from all of that concluded that I had MS . It’s all a long time ago and I certainly can’t remember everything but I think that was about that as far as diagnosis was concerned. The neurologist then started talking about starting me on a Treatment of which, in those days there were just 3 . I don’t remember any formal written diagnosis and although I keep pretty much all letters etc about my MS but I don’t have a diagnosis letter nor did I get formal written confirmation about having lesions.
i am thinking that if you haven’t received confirmation of ‘lesions’ then that’s what your appointment will be about i.e to confirm that you have lesions and to talk about what next. ( neurologists are pretty busy and I very much doubt that your appointment is simply to say that no lesions have been detected!).
I think you are just have to be prepared for all possibilities at your forthcoming appointment and if you are anything like me, then take someone with you to the appointment along with a pen and paper. Appointments with neurologist can be fairly quick and pass by in a bit of a blur.
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You’re welcome Jackie 
Unfortunately, you kind of have to just settle in and carry on with it - your answers will come but, it can take a while. There’s often more people involved than just the neuro consultant that you see (I’m currently under 3 or 4 consultants and a specialist nurse 
) to help figure you out. There will be all sorts of tests - blood tests, MRIs, physical examinations (I had a brain biopsy) then, the specialists in those fields have to interpret your results, then there’s the multi disciplinary team meetings to go over and agree on your results. Getting any of that wrong could be quite serious so, they rule out a lot of possibilities ( they even ruled out Syphilis and HIV with me) before coming up with a final diagnosis. All of these people involved are also under pressure with other cases in areas like paediatrics, geriatrics and everything in between. While I was in your position, I was hoping for the letter or call to say there was nothing wrong with me and to go and take care of myself but unfortunately, that never happened so, here I am 
For now it’s worth noting down all of the symptoms and dates that you can remember - it will help at your appointment.
Apart from that, try to carry on as normal for now and relax (I know that’s sometimes easier said than done)
Best wishes mate x
Jon.
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Thank you Jon, I have been making a list of symptoms since I first noticed them. But the reality is, some of them started a good while ago.
Anyway, as you say, life has to go on, but right now I feel very unwell. Thank you.
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