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Advice on questions to ask

Hi everyone,

After having a few symptoms such as my all right side going numb and double vision last June I was sent for my first MRI. It found a few lesions and my consultant thought it could likely be ms but at that point classed as cis. Therefore I got my second MRI with contrast. My consultant wrote to me saying this had shown no active lesions and the radiographer had noted the lesions had looked better than they had done in my first MRI. He said that clearly this is good news and we will discuss things further at my next appointment ( the waiting is driving me crazy). So my question is what sort of things should I ask him? My head is spinning with loads of stuff as I still feel rubbish at times and get some patches of numbness on and off. I just don’t want to be brushed off as I’ve read up and as I understand CIS can develop into MS. My appointment is on Wednesday, if it’s still classed as cis should I ask to be put on treatment as I saw on the ms trust that this is an option. Sorry if my questions are dumb , just worried and don’t have many people to talk to.

Thanks

Kelly

I’m still fairly new to all of this, having recently been dx’d with PMS, and expecting another P at some stage.

I wouldn’t know what to suggest you should ask… Tell your neuro that you are worried and don’t know what to ask about. They must be used to anxious patients.

But I would really recommend that you write down everything that worries you now. Take the list in with you and go through everything, even tick things off after you have discussed them. It is so easy to get flustered and forget everything. I always get home and realise that I’ve missed out some important things.

Above all, try not to worry too much…

Anne

hi kelly ask if you should still contact your ms nurse with new symptoms. do ask about the DMDs carole x

Hi Kelly

If the lesions they saw on your first MRI are smaller, and you don’t have any new ones, then chances are it could well be a CIS and over time you will slowly get better and have no resumption of symptoms.

I suspect this is what the neurologist could say to you at your next appointment (although I’m not an expert).

This is after all why the neurologists came up with the diagnosis of CIS. It is possible to have a one off MS type occurrence, it may take months to recover from, and it’s even possible that you won’t get 100% remission. But your body can work wonders at compensating for iffy nerve signals.

Or, the neurologist might say let’s wait another 6 months and see what happens.

Or, they could start you on a DMD ‘just in case’.

To be honest, the questions you could ask are all dependent on what the neurologist actually says.

Definitely ask about DMDs regardless. And ask what the neurologist expects will happen. Plus, you could ask about existing symptoms, maybe you could be given something to help with what symptoms you have now.

At least it’s only a few days. Let us know what happens.

Good luck.

Sue

Thanks ladies, I will write things down to ask my consultant so I don’t get flustered as I know I will. Your advice has been great thank you for replying, think I’ve been overly anxious but this has helped , will let you know the outcome of the appointment.

Oh, just had a thought, if you have ongoing physical symptoms / problems, ask for a referral to physiotherapy. That might at least give you some ideas on what exercises will be best to fix any niggling issues.

Sue

Another thing if you can is to take someone with you. They can be a valuable 2nd pair of ears.

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