CIS and scared

Hi All, I have recently been in hospital having had double vision vertigo and balance problems. I apparently had 6th cranial nerve palsy. They then went on to find a lesion on my brain stem between the pons and cerebellum… This accounting for all symptoms. I’m now Cis and wondered if anyone on here has had a similar experience. My double vision is 95% back to normal and I’m feeling ok. I have a mri spine soon as out patient but petrified of another lesion detection. I need to know though for peace of mind. It’s v scary all this.

Hi empielou, so sorry your feeling so scared and confused i know the feeling well, i also was diagnosed CIS in July and felt just like you do but believe me within a few weeks you will be less stressed but no less frustrated for answers. It’s the waiting around for results etc that are a pain but once all the tests are out of the way it gets easier. I am not as knowledgeable on all the issues as others on this forum so can’t offer any advice medically but can totally relate to how you feel emotionally x

Thanks for your reply sue. What symptoms did you have and did they find any lesions? Also what tests did you have? My csf had inflammatory markers too. I’ve read that I’m high risk of development of ms. I just can’t wait like you say for the mri spine. I had 2 mri brain and the one with dye showed the lesion.

Ihope your doing ok xx

I have had a few bits and bobs going on over the years mainly put down to anxiety and then i put everything down to my age, i had loss of sensation down one side of my face that i put down to having dental work 6 weeks previous, after a week or so i went to the doctor who sent me to the hospital, they ordered an MRI on just my brain a week later and only 2 days after that i was called in to be told i had demylination showing on my scan, i saw the neuro a month after who examined me and i was tested for everything you can possibly think of all negative so it’s then she gave me a CIS diagnosis. Since then i have had a lumbar punch, i had another neuro appt booked for early next May but last week i recieved a letter this has been brought forward to Feb. Its all a wait and see game that is so very very frustrating but it’s the nature of the beast :frowning: you will get to feel better about things and less stressed i promise x

Yes, it is. But the scanner doesn’t make things up - it will only find things that are there to be found, so try not to do too much guessing about the spinal scan. It is all too easy, when one has had a shock piece of news, to assume that there must be more bad news round the corner, even when there is no particular reason to think so.

I so feel for you over the peace of mind thing. I remember thinking that the only way to find peace of mind about all this would be to rewind time to the point when there was nothing the matter with me! Not possible, alas. As your post implies, the closest available state to peace of mind is likely to come from good information about what’s going on in there. If the new scan result is reassuring (and I hope that it is), then great. Your job then will be to park the whole business on a high shelf in the back of your mind and get on with life. If the new scan raises more questions, well you’ll cross that bridge if you come to it. Trying not to look too far ahead is the trick, I think. There are times in life when just plodding along, taking one day at a time is the best option, and this is probably one of them. Easier said than done, I know.

Good luck with it all.


Thanks so much for the support. I think you’re both right. I’ve noticed that people have such varied symptoms depending on where the lesions are. Funnily enough my son brought my mail to my boyfriends yesterday and in it was my scan appointment for next Saturday morning at Chorley hospital. So until then I will relax and hope for the best. I will post my results on here. I’m still getting pressure headaches although milder than they were. I put that down to post lumbar puncture which was Monday just gone. My consultant said people with ms don’t get headaches…is this true?

Thanks again for your support and sue I wish you all the very best let me know how you get on

Emma x

I am not to far from Chorley Emma :slight_smile: I bet your headaches are all the stress from this, hope you get the answers you need from your scan and soon feel more positive, try not to read to much until you have more answers if your anything like me your mind will go into overdrive, hope it all goes ok and i will look out for your update, take care xx

I have also had a CIS and at 90% risk of developing MS. I am waiting until January when i see my neurologist and get a formal diagnosis. Keeping smiling!

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What happened to you foxy ?? What symptoms did you have and did they find any lesions? Good luck I hope you are OK. I have MRI spine on Saturday I had 1 lesion appeared on brain stem and clinical symptoms too dizziness double vision on left gaze balance problems. Its all resolved now vision 98% back Emma x

Hi empielou, ur post sounds a lot like my experience tho different symptoms. Am cis after one big relapse with host of symptoms pins needles on both legs arms, stiff neck, ms hug, weakness, fatigue, anxiety, off work 8 wks. Much better now with only few grumbling symptoms left. Mri found large lesion in medulla/brainstem similar to u. Have also found o bands after lp. Neuro gave me 70% chance of having another relapse based on that. Have also had visual evoked potential that was negative, at least something gone the right way tho I was surprised cos see double a lot. The waiting is terrible but hang in there, and if u can I will too:-) hope this helps. F

I was off work for 6 weeks, double vision, balance problems,tight band across my torso,tingling in my hands, lost of sensation in my left side, fatigue. I also have sickness every morning, loss of concentration. MRI showed many lesions. I have a MS nurse allocated to me just in case i need it, but i have to wait until January for a formal diagnosis, although a 90% chance of developing MS.

Just want to know!

Hi all I posted this last year and have been fine up until now I’m dead in my right ear tinnitus and vertigo. Been to GP who said ear is clear but throat looks i nflammed and have me a nasal spray. Its done nothing 3 days into this if anything im worse. I’m worried it’s linked to MS. I can’t push any pressure out of the ear an he thinks it’s a blocked where air pressure goes. I may be being paranoid but I’ve had double vision only when laid down an had cranial nerve palsy before with my CiS. Anyone had this before ? Thanks

Sue froo and foxygirl how are you ?? Hope your all ok x

Keep smiling Foxygirl - nothing else to do! xx

Keep smiling Foxygirl - nothing else to do! xx

Only just seen this Emma i hope your ok and have some answers now ?

Hi, hope ur all ok, and ears getting sorted, keep going back to dr if not. I’m ok, just had MRI on Mon think it will be 6/8 weeks before results and seeing neuro, back to waiting again! Good luck. Froo