Hi
I was wondering if anyone could help?
I was recently referred to hospital twice by the same GP who was worried I had MS. Both times the consultant i met told me that I defiantly didn’t have MS. After been admitted into to hospital following both an MRI on the spine and the brain, which showed that I have inflation, I was told I was suffering from Clinically isolated syndrome.
The thing is I am awaiting an appointment to see an MS specialist but was given very little information in regards to what is happening or what this means. I was informed that my first symptom was the loss of sight in my eye which happened around Christmas time, with numbness, tingling and pin and needles type symptoms only occurring over the last two months. Since been told this I have been suffering terribly from fatigue which is having such a huge impact on my daily life. It’s all been a bit overwhelming.
I was wondering if anyone else has experienced this and what I can expect in the mean time. This is something i never expected to have and all the information I have found through my own research has provided some very scary stories. I am just looking for some advice on how to deal with all the symptoms.
Thank you in advance.
Hi Danni I’m like you was diagnosed last October with a cis after a drop foot!..does come as a bit of a shock!..I’ve had spine and brain MRI which showed areas of inflammation and a failed lumber puncture (they couldn’t get any fluid) but even although I’ve been diagnosed with cis and not ms my neurologist who is fab has started me on Dmds (avonex) so I’m lucky in that I’ve started treatment early…and fingers crossed I’ve been so far ok!..it’s very scary and confusing all this it does take a while to get your head round it!..but on the plus side its changed my way of thinking for the better I used to worry about everything but now I think wth the point in wasting the good times worrying about what might never happen!! …and coming from me that’s quite a revelation!..so hope you get sorted and find some answers it is a roller coaster ride but you will get through it!..it’s nice to hear from someone else with a cis as most people on the forums have ms…I find that a big confusing the whole diagnosis procedure between having cis and ms…Emma x
Hi Emma
Thank you so much for getting in touch. I think the most overwhelming part is being told by two different Drs that I do have MS then being told that it isn’t MS. I never got a lumber puncture and the research I have done points to the fact that they provide the test results to determine what you have. I was told that there was no medication that could be given to me and advised to take vitamin D.
Do you mind if I ask how long your symptoms lasted? All the Drs I have spoken to side stepped a lot of my questions saying that it would be best to wait to speak to the MS specialist, which I find just adds to the confusion.
Danni xxx
Hi Danni l’ll send you a pm look in the top right of the page for it. Emma
Hi did u get it?.. Hope so it took ages to type lol! x
I did and just replied. Thank you for it and sorry for the big speal that is coming your way 
Hi Danni and welcome
What the MS specialist will probably be looking for is evidence of how many attacks you have had. If it is the one, then CIS or probable/possible MS is a likely diagnosis. If it is more than one, then it may be MS.
The generally used rule about attacks is that new symptoms are considered part of the same attack if they start within 30 days of the first symptom. After that, they are considered a new attack. Unfortunately, this is all very well on paper, but reality isn’t quite so nicely parcelled up so it can get pretty confusing. That means that a lot of it is down to MRI results and the MS specialist’s personal opinion.
I would suggest, therefore, that you have a think about the past six months and try and remember when things started, improved and/or stopped. This info may be very helpful for the MS specialist.
The other thing that the MS specialist will want is evidence that your symptoms are due to MS and not an MS mimic (there are many). For this, he/she will consider whether or not your history, clinical exam and MRI are sufficient for the diagnosis and, if not, what other tests might be helpful.
All of which means that your appointment could go a number of ways. The MS specialist may confirm CIS or probable MS and tell you to come back if you have a new attack or give you an appointment at some point in the future, they may say there’s not enough info to be sure what’s going on yet and send you for various tests or, if the evidence supports it, they may diagnose MS. Whatever happens, it’s great that you’re seeing a specialist and can (hopefully!) get some answers. Don’t forget to ask them for help with your symptoms while you’re there too.
I hope the appointment comes through soon. No harm in calling and making sure that the referral has gone through if you don’t hear soon - these things do get lost sometimes 
Let us know how it goes?
Karen x
Hi Karen
I finally got my appointment through for early July and Im looking forward to as strange as that sounds as I have so many questions now to ask. I had an extremely good day on Monday but now im back to lose of sensation and the tiredness is unreal and its what im struggling with the most I find.
Danni xxx
Hi Danni, 1st time here. I have been doing ++ reading about disease modifying drugs. There is evidence to say that if you have CIS & some plaques/lesions/white blobs (whatever you want to call them!) on MRI then it is worth starting DMD’s, I wish I had known that 2 years ago. Earlier the better to start I gather. I so understand the symptoms you are experiencing - I lost sight in eye 2011, recently have extreme overwhelming fatigue (now resolving), and tingling in my legs. They say its hard to diagnose MS from 1 symptom, its only when time goes on and you have another sign can they say it is MS. Easier now with MRI scans though. Very good luck with appointment. I am also awaiting appointment - with aim of starting DMD’s. Bea ps - I find that no-one really understands what the fatigue is actually like - how debilitating it is.
Hi Bea
Thank you for getting back in touch. I will ask my MS person about them or what i can get because i was left with the notion that they couldn’t give me anything until they know if this will develop or not. I wish you all the best with your appointment and please let me know how you get on. I totally agree fatigue is something that makes it harder but i can now go on public transport without worrying to much about falling asleep.
Danni xxx
Hi Danni, Looking at posts above Emma was prescribed DMD’s despite CIS diagnosis not MS. So definitely worth exploring, although current drugs all involve regular injections - so it depends on how bad you feel your current symptoms are. The MS Trust booklet on DMD’s states “when an MRI scan indicates a high likelihood of developing MS within 12 months of a CIS”. And also - “when used in people with CIS, some of the disease Mod drugs may increase the time between the first onset of symptoms and further attacks that lead to a definite diagnosis of MS. However, as not all people with CIS will be diagnosed with MS, the neurologist may be reluctant to start what may be unnecessary treatment too early”. Just happen to have the booklet to hand! I wonder what proportion of people with CIS go on to MS??? - Hope that is helpful for you. Very best of luck to you too. I know it can feel utterly overwhelming and very scary - one day at a time! Bea x
Hi Bea
Sorry for the very late reply. I have now spoken to my new neuro, rehab consultant and ms nurse and all are very reluctant to give me anything as i have had steroids already this year. Tough things have gone slightly downhill the last couple of months is starting to get easier to deal with everything that this illness brings. I have found both this site and my local branch great support. Hope you are keeping well.
x
Hi Danni
Just wondering if you still have a diagnosis of CIS or did the MS specialist diagnose you with MS? I do hope you are feeling a bit better and glad you have the support you need. Best wishes to you x
hi Heather
Everyone is saying it is still CIS but they seem to all agree that it flared up about November December time last year. The neuro said that until something changes or it goes away they can’t say what is going to happen. So as with everything one day at a time is the key. Thank you as well and i hope everything is good with you.
Hi Danni,
I can definately relate to your situation. I am also CIS (7 months in), and although I have adopted diet, sleep, exercise lifestyle changes and LDN, i still think about whether or not to adopt DMDs, especifically Copaxone. To make matters worse, Neuros are giving conflicting opinions, reflecting partially what has been stated here. In one way, one Neuro claims there is some reasearch (I havent been able to find it directly, but several comments to it in MS forums) that states that DMDs delay the onset of MS from CIS (but again there is no similar research about lifestyle changes and onset of MS, and probably never will be), two other Neuros are more conservative, indicating that given the mild first bout/event I had and no progression of MRI lesions, they see it best to look after myself and wait.
Waiting though, really isnt my forte!
Best of luck to the both of us.