Hi everyone, I have had symptoms from Oct/Nov 2022. Tingling and numbness in legs and feet, a lot of fatigue, tingling side of face and back of head, reduced power in legs, walking has definitely been reduced, blurred vision. I had an MRI scan in July which showed 3 lesions in my brain. My neurologist hasnt gave me a diagnosis and says that my physical exam findings are normal, however my reflexes are very brisk and i definitely have reduced power in my left leg. Im waiting on Visual Evoked Response Test. He said if this comes back normal, I dont have MS. Im so confused right now and really do feel that he is being quite dismissive. Has anyone else had experience of this and can you advise me on what I should do? Many thanks.
Hi
Were the lesions a type that is normally found with ms?
Hi, he didnt say tbh. He doesnt know, he said it could be the early stages of MS.
I never had an Visual Evoked Response Test.
Just 2 MRIs, lumber puncture and lots of blood tests
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Get an LP which is the corroboration to the MRI. If you get oligoclonal banding in your CSF, that would suggest MS.
Go back to your GP and relay your dissatisfaction, ask for a second opinion. Or just ask the Neuro for the LP. If he refuses and you later get diagnosed MS, that would make his behaviour tantamount to negligence.
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Sadly yes, I have a v dismissive neurologist who told me that muscoloskeletal pain was not MS pain, I was too old to have ms (50) & I was neurotic to think it was possible after I was given an MRI for balance problems that came back full of lesions and ‘highly suspicious of demyelinating disease’…
Someone advised me to ask: ‘if that test doesn’t support a diagnosis, what test does’
He had offered me lumbar puncture 2x but I just had no idea what was going on, should have taken it then. Not sure if evoked potentials is diagnostically relevant these days. There is diagnostic guidance from NICE which helps show what the neuros have to do to establish it is ms. Also there is rapidly evolving guidance on who gets DMT, I was told with no short shrift even if I am diagnosed I wouldn’t be eligible.
Good luck & don’t be demoralised- you are definitely not alone.
My hunch (and it is at best a gross generalisation) is that they tend to sound dismissive at least until they think there’s fair chance you do actually have MS. Even then, they would rather you go home and not worry until they’re sure. But we do worry, of course.
My neurologist was totally different. It was like she believed I had MS and wanted to prove it. I dont think many are like her.
Hi all
Having seen the headline, i thought have to add my little lot.
Having had numerous private consultations, reviewing two MRI’S, one 3T privately and one on NHS with contrast, the neuro is insistent its not MS, although several foci on brain, albeit no sign of demylienation.
I did ( Thank you Graeme) push about an LP, essentially neuro said no need, but have ongoing tingling in both hands and arms, some 15 months, bladder and sleeping issues.
Cervical stenosis suggested, saw a spine surgeon, he said ageing process,no need for intervention, I’m 54!
Did push about PPMS , neuro said no, just on neuropathic painkillers. NHS appointment in 3 months, not sure what to do now.
Best wishes to all
Frank
Hello,
Sorry to hear you felt your MS symptoms were simply dismissed by the neurologist.
It not like before there was MRI and LP, when the only thing they had to examine you for multiple sclerosis, was cotton wool?
Imagine, you would need to feel almost complete numbness, before you’re diagnosed with MS.
Best regards,
JP
Hi,
I have been incredibly lucky with my neuros - they have all been great, maybe ask for a second opinion and an LP.
Initially my LP came back clear, but when the last test came back it showed banding and the diagnosis was made soon after.
Don’t give up - keep at them, it’s time consuming, but worth it in the end.
Also, just a note -but keep records of all the calls, appointments, communications with the docs, sometimes info like that can come in handy. They don’t like it when you can quote names/dates/times and conversations back to them. Makes them a little more conscious of their actions.
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