Hi Just wondering if someone can help? I was diagnosed with CIS in Ovemebr, having initially been told I had had a stroke, when I developed some odd visual symptoms. Prior to this I had had two episodes of numbness in my right hand an pd on my body, which I had ignored and put down to being a bit tired after the birth of my second child. I was told by my consultant that I had some lesions on my brain MRI and my cervical MRI and also oligoclonal bands on my LP. My bloods were all normal. Because my initial scan was of my brain only, 6 months following which I had the brain and spinal MRI which showed “mature” lesions they think my eye sx probably happened at the same time as my right hand (although I was clear I had this 2 years previous). In the past 3 weeks I have developed weakness and numbness in my right leg and am gong to see neuro as advised by ms nurse…have been told I might need steroids, so is this a relapse and now do I have ms? Or will they ot diagnose unless there is something on another MRI? Sorry for all the questions but keep getting told I’m in denial, not sure how that works as I have been told I don’t have ms as don’t fit the criteria so ot sure what I am in denial about! Thanks X
Hi Puzzled… I’m guessing you are new to the forum so welcome…
I’m not an expert by any means… just a person with MS who’s picked up a bit of info along the way… but I’m assuming they said before that you didn’t fit the criteria… they meant the McDonald’s criteria for dx MS.
I’m a little surprised as a positive lumbar puncture… which you have had… usually will lead to a dx of MS… but for relapsing remitting MS I’m guessing you, at that time, still did not fill all of the McDonald’s criteria… even with the positive LP.
I have copied/pasted below a paragraph written by Karen (Rizzo) who’s very knowledgable about all this stuff. Please read her full explanation in the ‘sticky’ at top of ‘newly diagnosed’ page, called A Brief Beginner’s Guide to the Brain.
Anyway here is the para’ on McDonald’s criteria:
The McDonald criteria stipulate that, to be diagnosed with relapsing remitting MS, patients need to have at least two attacks and at least one lesion in at least two of four specified areas of the central nervous system: three in the brain and one in the spinal cord. (You can download the full paper for free: it’s Polman et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. ANN NEUROL 2011; 69:292-302.) The criteria for primary progressive MS are a gradual progression of symptoms (normally of at least a year’s duration) and two of the following: a positive lumbar puncture, at least two spinal cord lesions, at least one lesion in at least one of the three specified brain areas
I am thinking (sorry now I’ve done a copy and paste the whole formatting seems to have changed!)… anyway I’m thinking that it is now possible that you might get a dx of MS. BUT please please be aware that I am by no means an expert and I could very well be wrong about this.
Only a neuro can tell you if you can now be dx with MS… but I think that is what you should perhaps be prepared for… giving what your symptoms are, your symptom history, lesions on your MRI, positive LP and what now looks like possibly a relapse.
I’m not sure how much you’ve read about MS… but let me assure you right here and now… MS is NOT the end of your life by any means. Most MSers continue to work, have relationships, babies, travel, drive, party… just about anything. Of course some things do change as you always are aware that you have MS and during relapse things can be difficult… BUT life does go on and it can still be a good and happy life.
Come on here and ask any questions you have, or share your feelings and fears. We all know how it is and the support on here can be a real lifesaver.
When are you seeing the neuro? (formatting has changed again!!!). I hope it’s soon and you can find out one way or the other.
Take care hon… I have given you an honest answer but do read Rizzo’s ‘sticky’ and see what you think.
See you on here again soon… and go ahead and ask more questions if you have them,
Oh formatting sorted itself out when I pasted! Pat x
Thanks so much, it’s very confusing an frustrating as although I don’t want to know I really just want to be told. I’m trying to be positive adopted an anti inflammatory diet go to the gym (although tip on treadmills!)…I was always a non-believer in forums but there is so much info and more importantly support! Thanks X
Snow Leapard has answered the question perfectly!
Just wanted to say I know exactly what you are going through - my experience pretty much matched yours. I was initially given a dx of CIS and I had a positive LP. But - was told to wait until a further relapse to fulfil the criteria.
I was having relapse after relapse but it took almost a year to sort out a new scan that confirmed there were indeed new lesions in different places. I was pretty confused. Was told it was probable MS and I had to inform the DVLA, and was given the MS nurses number. So was it MS or not??? Like you, I was also given steroids for relapses even before I was fully diagnosed.
I found I had to push myself through the whole system. I badgered them for an earlier appointment. My second scan was in March last year, but my neuro appointment to discuss the findings wasn’t scheduled until September. I made a nuisance of myself and got the appointment moved to May. Where I was diagnosed with highly active RRMS.
Anyway, stay sane (as much as you can), it’s a convuluted system. Sounds like you’ll be diagnosed after your next scan?
I also had a diagnosis of CIS following a brain scan that showed multiple lesions and a positive lp. This meant that I still didn’t fit the criteria as I needed the ‘dissemination in space and time’ ie I needed further symptoms to show up at a later date and somewhere else in my body. For me it happened just 3 months later and I had IV steroids and further blood tests to rule out anything else before they would make an official diagnosis a month after the second relapse.
You can’t hurry neurologists. There is no test that positively identifies MS; all they can do is rule out everything else instead so I think that is why they tend to take their time and be absolutely sure there is nothing else it can be before they label you with this illness. Think how awful it would be to be labelled with an incurable illness incorrectly …
I know how frustrating it is but please try to be patient. If you do have MS then you will eventually get a diagnosis.
Thank you all so much for your posts, it feels a bit lonely and isolating when all this has been going on, especially as i am extremely fortunate to be ‘outwardly ok’ apart from a numb leg and hand…Well seen neuro and been diagnosed with RRMS…a shock to my husband who was hoping he would say I was mad!! So now I have to think about which interferon to take…any advice would be appreciated. I have young children and a busy job as well…how do people decide I went on the ms decisions site and its rebif vs avonex but mi not sure about the evidence with three times week injections being more superior to once a week? Any advice would be appreciated. Tx
Oh dear… T it is such a shock to be dx even if you are expecting it.
Takes a while to get your head round it hon… give yourself lots of TLC, remember it gets easier with time… and go with the rollercoaster of emotions (and they will go from anger, to fear, to guilt and to relief).
It will get easier, promise!
Suggest you start a new thread hon to get advice on the interferon and to get advice on being newly dx. Adding such info at end of a previous post means people might not see it.
Take care T, sending you big ((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
As Pat said, the diagnosis is like being on a rollercoaster so don’t be surprised if your emotions are all over the place. The best place to get advice on the interferons is on the Everyday Living board as there are some there who have just had to make the same decision.
I have been on Rebif for almost 4 years now. I had 3.5 years in remisson (sadly not symptom free) and am recovering from a relapse which started in March. This relapse was not as severe as previous ones so I think Rebif is working for me. The purpose of DMDs is to reduce the frequency and severity of relapses.
I can understand how you feel lonely and isolated when you look okay on the outside. This condition is very invisible unless it affects our mobility to the extent that we need walking aids and because of that we get very little understanding from non-MSers. That is why these boards are so crucial to our sanity - I come here because nobody else understands what a fuzzy foot is or a tingly toe etc.
Thanks…Im new to forums never thought I would ever be on one! So I will definately take your advice and start looking…I thought I was ok yesterday but felt quite sad today and had a panic attack…that’s never happened to me before, Im lucky I have two lovely kids and a very supportive husband, but it’s sort of like a two edged sword, makes it feel worse
Yes, I understand that too. When people are nice to me I want to cry but when they don’t understand or empathise I want to scream. That’s the rollercoaster at play …