CIS and first neurology appointment

New diagnosis and before diagnosis
1

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:

  1. 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?

  2. 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.

  3. 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!

2

CIS is signs of demyelination that do not meet the criteria for an MS diagnosis. If you have new symptoms and new lesions then you may be diagnosed. This will probably be explained to you at your next appointment. They will probably adopt a watchful waiting approach.
On lumbar punctures - you can get false negatives and false positives and it is quite invasive. Some doctors go for it anyway.
It sounds like you’re in a very early stage and I would be interested in how I could prevent progression, if it is MS. I would also like to know how often I can have follow ups and what symptom I should look out for.
I found it very hard to get a second opinion in the early days, even though I was a national centre for MS. It seems like a difficult disease to diagnose. CIS is very common it seems and it doesn’t always progress.
Hopefully your one of those and your child will be none the wiser. Good luck.
S

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Well, that’s all a bit of a shock to your system, isn’t it? I am sorry that you are having a torrid time. As you say, good that diagnostic stuff’s happening fast, but your head must be spinning, rather.

Well done, doing your homework. I don’t know that there’s more prep you can usefully do before your consultation. More a matter of keeping an open mind and having a useful, collaborative discussion, I think.

Personally, I would keep my powder dry on the second opinion front at least I had a clearer idea on what the first opinion was, and you’ll hear more about that when you meet the neurologist.

Having said all that, I know there are people on here who took a CIS diagnosis as a signal to do everything they could to stop any disease process in its tracks by getting on a disease modifying treatment - the more effective the better - straight away (i.e. before a formal MS dx). I don’t think that is typical in the NHS, but when an assertive patient who knows what she wants meets a suitably gung-ho MS Specialist Neurologist, it can happen. If I had been in your shoes now rather than 20+ years ago, and the treatments available now had been available then, I might have been that sort of patient. But that’s all for the future, perhaps. For now, you have plenty to think about and digest, and I wish you well.

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Thank you, Alison!

1 Like
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Thanks so much for this. Watch and wait approach is what im expecting too, hopefully the Dr will be able to give me some amswers in regards to my risk. Thanks so much again this has been very helpful :blush: