I am just looking for a little bit of advice/reassurance.
Tomorrow I have my first appointment with neurology and I am worried about what will happen/what should happen.
I have already had an MRI scan on 8/10 and they have reported multiple lesions and coupled with my symptoms they are indicating MS, what will happen now?
I am in the UK.
My doctors did a fast track referral but that was still a 8 week wait but the hospital phoned me today to say that they had put me on the cancellation list because of the findings and the report after my MRI scan and they would like me to go in tomorrow at 10:40am.
I think maybe it depends on your area and your neurologist?
I saw my neurologist that said the findings made him confident enough to say it was MS, but he had to refer me to the Neuro inflammatory clinic. From there, that neurologist wanted further tests (LP and MRI with contrast). That all took a further 10 months.
At the time, I was annoyed. However, because of the contrast MRI, they found my MS was highly active and have put me straight into second line treatment, which I start a week today.
I think it depends on the findings, the neurologist making the decisions and the area you are in.
So I am feeling very deflated and don’t know what to do, say.
The neurologist I saw today gave me a full check over and took my medical history.
He then said that my symptoms are consistent with MS but the lesions on my MRI are not in the typical places for MS lesions. He said they should be more central around the fluid sack in the centre of the brain and mine aren’t.
So he wants to re do the scan in 4-6 months to keep an eye on them but in the meantime I should go back to the GP about my symptoms.
Hhmmmmm, I am somewhat inexperienced admittedly…….
I’m fairly sure mine aren’t central?
And I’m also fairly sure that there is no typical places for lesions or typical MS. If there was, we would all be square pegs and MS would be a square hole! There are many very informed people on here who might be able to shed more light.
Did he say where your lesions were? Not that it makes a difference, I’m just curious.
That’s what I thought but when I tried to ask questions and ask for his knowledge on why I am experiencing the symptoms I am, his response was I have been a neurologist for 15 years and that’s my view.
They are in subcortical and deep
white matter of both cerebral hemispheres.
I would be feeling deflated too. Not that anybody wants the news that they have MS. But the consultant sounded like they shut you down when you tried to ask questions.
I also believed MS lesions could be anywhere but I have read before that there are more common places.
I have seen two consultants now both with different views.
Told I have CIS but the second consultant seems really active in trying to get to the bottom of things.
What MRIs have you had ? Brain and spine ? How you had a lumber punchure yet?
I absolutely agree nobody wants to be told they have MS but I would like a reason behind why I feel the way that I do.
I have only had a head MRI but nothing else. The consultant today said that he wouldn’t do any further testing at the moment like a lumbar puncture. He wants to wait 4-6 months and do another head MRI.
I started with slight numbness on my face. Which seems to come and go.
At first doctor was saying trigeminal problem. But within days I had brain mri. They found lesions, first consultant said 5 but this consultant said two. One is active near the trigeminal nerve and another one that is not active
I had spine MRI last week and lumber booked for the 14 nov.
This consultant seems to think MS but at the moment they cannot prove I meant the time criteria.
Its so strange that different consultants have different ways of doing things
I think i would try to talk it though with the GP. Its good you are having another MRI but 4 to 6 months seems a long time when you are not feeling great.
Not sure if you could ho private to see another consultant.
I have a private appointment booked on the 24/11. The private appointment was booked before the NHS cancellation came through, I haven’t cancelled it yet.
No he gave no explanation just that he’s been a neurologist for 15 years, any questions we asked he said speak to GP.
MS lesions can be anywhere, but part of the diagnosis criteria is to have lesions in the ‘typical’ areas of the brain.
Info about it here:
Lesions in other parts of the brain can give symptoms - they are signs of damage.
At least you haven’t been dismissed, and they are doing a follow up MRI in due course. I hope that will show no change - no progression but no diagnosis is better to have than changes and an MS diagnosis.