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Diagnosed with CIS and unhappy, I don’t want MS but.......

Hello,

I was diagnosed with CIS on Saturday, following two MRIs, bloods and neurological examination. I have multiple things which have been called lesions in one report and hyper intensities on another, in three different locations in my brain, and one in/on my cervical spine. I haven’t been offered DMDs or any support. My neuro states that things look stable, and that my attack or whatever it was, occurred in October when I first had the bulk of my symptoms, numbness, weakness, dizziness and fatigue.

The neuro wants to see me every three months and I really don’t know how I feel about this. I obviously don’t want MS, but I have to admit that I prepared myself to get diagnosed as such. To me, CIS seems like a ticking time bomb, especially without any medication, although I understand that DMDs are potent and shouldn’t be taken lightly. From my own research, based on where the lesions are in my brain I’m very likely to “get” MS later, and that again makes me totally petrified. My husband doesn’t really understand, he thinks I just want it labelled, and he’s right to some degree, but I think it’s mainly the uncertainty. Does anyone feel like me?

I’ve spoken to a friend who happens to be a GP and she has suggested that I get a second opinion, but I picked my own MS specialist, who is known to be both amazing and cautious. My head is spinning, thankfully not literally anymore!! I really don’t know what to think, feel or do anymore

I know exactly how you feel and feel exactly the same. I’d rather be diagnosed than live in limbo with no treatment plan. I have been cis for just under 3 years after losing sight in left eye and being diagnosed with optic neuritis. I also had leg weakness dizziness and mixing up words. Over 20 lesions were found on brain mri and recently done spine mri which has one lesion. Positive lumbur puncture. I have luckily had no further new lesions but have had intermittent issues with leg weakness sensory issues which are usually explained by Neuro as being caused by lesions. I am hoping the new updated mcdonald criteria will allow diagnosis at next appointment due to positive lp. Did you have lumbur puncture? Feel free to message me if you want to chat.

I can empathise! I was diagnosed with CIS 9 months ago. I have just had a follow-up with my neuro - having originally said that he wanted me to have another MRI 1 year after the first (which would be this March), he’s now said he wants to do it at the end of this year instead (so 2 years after my main symptoms first appeared). He’s told me I’ve a 70-80% chance of being diagnosed with MS within the next 10 years, based on findings so far, but that the likelihood goes down if I don’t have a second clinical episode within 2 years of the first. I have one lesion in my c-spine (the one causing the symptoms, apparently) and various asymptomatic lesions in my brain.

Like you, obviously I don’t want MS, but living with the uncertainty is hard. The way I’m looking at it is that there’s still a significant (if smaller) chance I’ll never ‘convert’ to MS, and even then there would be a lot of uncertainty around how the disease will develop, so in a way I’m in a good place at the moment, with relatively minor sensory symptoms and a glimmer of hope. I know what you mean about medications/DMDs - I do sometimes worry that things could be progressing without my knowledge, in the absence of symptoms, and that without a diagnosis I have no possibility of recourse to treatments that might slow it down. But then again, knowing how badly I reacted to steroids when I eventually agreed to take them for the first episode, I am also grateful to be drug-free! Plus treatments and knowledge about them are evolving all the time; it may be that we’ll be in a better place for effective treatment in years to come, should we need it. I know it’s a cliche but I’m just taking each day as it comes - and I do feel that the uncertainty gets a bit easier as time goes on - you kind of get sick of thinking about it!

BTW, in relation to the revisions to the McDonald criteria that the other poster mentions, I asked my neuro about this. I’ve never had a lumbar puncture and no one has mentioned it. The neuro said that even if I did have one and it was positive, that wouldn’t put me in a different bpat - he’d still be awaiting clinical evidence of another attack (or changes on a follow-up MRI).

I haven’t been offered any support either, though the neuro and my GP have both been great in saying that I can contact them at any time with questions or to report any new symptoms etc.

So I can’t offer any advice, but yes - there are people who feel similar to you! Feel free to pm me. Good luck!

Sarah

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Thanks for the replies. A couple weeks have have gone by and I’m starting to feel a little more comfortable with the diagnosis. Do any of you know what I should expect in the follow up appointments? And does anyone else have 3 monthly follow ups? I went private, but will be seeing the same neurologist on the NHS. Just wanted to to get a feel for the normal protocol. Ironically I went private to speed things along and here I am still having to wait!!

Christina

Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis There is some useful information on there about the chances of CIS converting to MS and the risk and benefits of taking a DMD as a precaution.

Hopefully each of you will recover from the effects of the CIS and not convert. I can imagine how the worry preys on your mind.

Sue

I found these posts after searching the MS forum for CIS. I’m a bit late to join this conversation, but hoped to chat to others who have been diagnosed with the ‘limbo’ of CIS. I had what turns out was an ‘episode’ in June 2017, with L’hermitte’s sign, then was referred to a neurologist and finally had an MRI in November. I only found out I have CIS in December after a visit to the GP to ask to discuss my MRI and blood tests. My MRI came back with what the neurologist described as multiple spots of ‘inflammation’ in the brain (none on the spine). They look like multiple white spots on the MRI, and I’m not sure why he didn’t use the word lesion. The neurologist gave very little explanation about what this might mean at the time (“could be a whole range of autoimmune diseases, including MS and Lymes”) and the word CIS wasn’t given to me, but was written in a letter to the GP. I pushed for another visit to the neurologist in January and this time went armed with a voice recorder and a list of questions. We discussed a lumbar puncture, and this time he didn’t push for it or advise I do one, implying it wouldn’t make much difference to a diagnosis, as I would need another ‘clinically significant’ episode anyway for an MS diagnosis. He said DMTs weren’t an option and we have to ‘wait and see’. I asked what symptoms are considered ‘clinically significant’ - and he said for me to make another appointment if I have ‘serious’ clinical symptoms - incontinence, mobility issues, cognitive or visual problems. He said the likelihood, given my scan, of me ending up with MS at some point is around 80%. I’m generally quite a proactive person, and I’m finding it quite hard to be told to just ‘wait and see’. How have you managed this ‘limbo’ state, not knowing what it is you’re really dealing with? Have any of you pushed for DMTs or another MRI in the absence of another clinical episode? I have several friends with MS and they have followed the ‘best bet diet’ for years - I’m trying to start this too, but it’s so restrictive; no dairy, no gluten, no legumes and almost no saturated fats. Has anyone dabbled in these kinds of things?