Hi there!
I’ve been reading lots of the information and forums here and found so much helpful info but wondered if I may pick your brains…
I was diagnosed with CIS on Thursday after an episode with numb left leg, painful eye movements and weakness in left hand and leg. I suppose im quite lucky that this got diagnosed quickly. I had an urgent MRI the week prior of my lower spine (checking for cauda equina) all clear, symptoms progressed and they did the usual bloods, ECG etc to rule out other things, lots of neuro tests then did another MRI of my thoracic spine and brain and thats when a consultant came to speak to me and diagnosed CIS. Now all i remember was him saying that they found a lesion on my spine which explains my symtpoms, and that there was some white matter on the brain but that can be normal and that the neurologist would discuss all this in more detail with me. The neurology Dr couldn’t see me on Thursday so this was a general medicine consultant who sort of explained he was the messeneger and couldn’t answer too many questions, fair enough as neuro isn’t his specilaity. He booked me in for for the neuro consultant next Wednesday which im very grayeful for how quickly this all seems to be moving. He obviously explained that CIS can go onto become MS if I were to have another episode or if they found more lesions (I’ve been doing lots of reading on the Mcdonald criteria and dissemination in space and time and think i understand now).
Now…I suppose my questions here are:
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What should I expect at this neurology appointment? I wish i asked the consultant at the time but you know how it is. I have already had the MRIs etc so will he just be confirming it all with me? I’m already preparing questions to take. I’ve looked the Dr up and he doesn’t specialise in MS, I don’t think there are any neuros in my area who do, so I suppose I’m slightly paranoid that he may not pick something up or take me seriously? I’m sure that wont be the case. But I wonder if he will be able to at least give me information on risk of this turning into MS in the future…I have an 8 month old baby and whilst I of course do not wish for this as a diagnosis, I suppose I’d rather know my chances so I can just crack on…does that make sense?
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I wonder if it’s worth paying privately for a second opinion, taking my scans etc even if I connect well with the NHS consultant…what are peoples thoughts? Can anyone recommend a good private neurologist? Happy to travel, I’m Dorset based.
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What questions should i be armed with? Should I be requesting any other kinds of tests? Will I need a lumbar puncture or anything?
I’m so sorry if this all sounds jumbled. My mind is super fuzzy and I’m so tired. On the up side though my numbness is improving day by day!
Thank you so much in advance for any info!