Hello All.
I was diagnosed with CIS about 3 weeks ago. At the time I had been having spasms in the left sde of my face and travelling down to my left arm. I was experiencing these 'attack’s every day for around 4 weeks which would leave me unable to talk or use my left arm.Initially I was told that I was having a stroke/TIA but CT scans came back clear. I was then referred to the neurologist.The neurologist has confirmed that from my MRI scan I have multiple lesions in the brain and also on the spinal cord. At this time he has advised that I am at high risk of developing MS but cannot confirm diagnosis unless there is another episode. I have been referred to the neuro team for support.
I am 33 and to be honest I am in complete shock! I never expected this and to be told that I may go on to develop MS is something that never crossed my mind. I genuinely believed that I was just having an ‘episode’.
I have suffered with terrible fatigue, migraines, bowel problems for many years and put this down to my under active thyroid (my thyroid has always been blamed for everything!) it now appears that these symptoms may have indeed been an indicator of MS??!!
Just as I am starting to get my head around everything the last week I have now been experiencing the most strangest of feelings. Apart from the fatigue taking a hold of me I am having blurred vision and have the most horrible feeling that I cannot get my breath properly and that I cannot gain my balance. As well as this I am having somewhat shooting pains down my back which are really painful and some twinges in my head which are almost like little shocks. These have lasted for about a week now and the only way I can describe it is as being ‘drunk’.
I feel so lost and don’t know whether this is just all in my head or I should contact the neuro team. I do not want to waste anybody’s time but I am an emotional and physical mess.
Any advice welcomed.
Hi Emma
In my opinion you should contact your neuro team.
The not able to catch your breath could be the cuddly named MS hug. We all understand that it is nasty and very poorly named.
Blurred vison could be optic neuritis.
I’m obviously no neurologist, but it does sound like you could do with some help. Have you been given contact details for an MS nurse? If so, contact him/her, possibly they could help,you to get some high dose steroids, which may be able to bring this episode (or call it a relapse) to an end sooner.
Also, have you been told you could start taking a disease modifying drug (DMD)? There are some which can be prescribed to someone who has a CIS diagnosis. These are designed to reduce the relapses a person with MS has, or with a CIS diagnosis might help to delay any possible translation from CIS to MS.
Regardless, it does sound as though you need some more support.
By the way, you’ve tagged onto the end of a fairly lengthy thread, you might get more direct help by starting a new thread of your own.
Sue
Hi Sue.
Thank you for getting back to me. I am new to all this so any advice I can get would be great.
Yes I have been allocated an MS nurse which I am waiting to have an appointment with. Until then they have provided me a number to contact them should I need to.
At this moment in time I have not been advised of any medication that I could take as I am in the bracket of ‘CIS’ in which they would not look to prescribe me anything.
I have been offered another MRI within 6 months to determine if more lesions have formed. If so then they will be able to diagnose me with MS and offer treatment.
Thank you for your advice 
I am sorry that you’ve had The News. Always an unsettling shock, even when you have felt the way the wind was blowing.
Alison
Hi Emma, Sorry for the late reply. Having only being diagnosed a month or so ago after spending a year and a half in “limbo”, I can honestly say that Ive felt the same way as you. The diagnosing process for MS is complicated, but in short: you need to have 2 “attacks” so basically 2 symptoms or episodes at seperate times (either the same symptoms or new ones) that last more than 24 hours without a sign of infection. I had only 1 episode as above, and my MRI results have showed lesions which have cleared. So you can imagine my shock when I then had numbness/tingling and I was diagnosed even though my brain and spine mris were currently clear. I would honestly tell your neuro team the symptoms you are having now. As far as MS goes, sensory symptoms are generally considered “mild” but blurred vision and loss of balance could be optic neuritis which is a sign of MS. The last thing you want to do is not report it and end up worse off. Interested to hear if you ever did go to the neuro team. Michelle