I am new to all this and just really looking for some help and information on how other people were diagnosed with MS.
Im 25 and 6 months ago had blurred vision so I went to the opticians and they referred me to the hospital, I was admitted and was on a ward for 1 week, i had a lumbar puncture, an MRI with out contrast and one with and various blood tests. It turned out the blurred vision was optical neuritis which when looking online seems one of the first symptoms of MS. on my MRI they found 2 lesions and called it a CSI and said its about 70% chance I have MS, them words have haunted me ever since. They said there is a 5 year bracket and if i have another lesions within that time i will be diagnosed. They booked me in for another MRI 6 months later and I went to see the neurologist yesterday for my results, one lesions has shrunk and neither are active which is the best news i could hope for at that time. However my issue is he said he will see me in 12 months and not carry out another MRI just wants to see if i have any symptoms but even he said more lesions can appear without symptoms so why wouldn’t they repeat the MRI. After Alot of persistence of me asking he said its because even if i have more lesions but no symptoms they wouldnt give me treatment! This doesnt make sense to me surely if theres more lesions i should get treatment to help prevent more and more damage? As i wasnt happy he has referred me to an MS specialist but has anyone else had similar to this?
The best ‘news’ i might suggest for you to dwell on, is be grateful for small mercies. You are without new symptoms and that is not a bad thing!
The nature of MS is pretty much not understood. And consequently, so too is CIS. 70% of the latter can progress to becoming the former. Let us hope that you fall within the 30% yes?
MRIs are wonderful things and they do indeed help diagnose a situation, an activity level and any changes through time. if you can secure the promise of another MRI in the future, i think that would be good. but it is correct that you can have symptoms without new lesions, and new lesions without new symptoms.
Ultimately, it might not sound too reassuring that the professional care providers might not give you drugs even if new lesions are found, but with them not being a cure, but merely a ‘life quality management tool’, what would be the point?
My diagnosis came about because at the last moment as i was leaving the neurologist’s office, i recalled a situation which had occurred half a year earlier. When added to what i had already explained, this secured my diagnosis of MS and now, a life time of taking big drugs, which i have to contribute money towards is upon me.
It is a double edged sword; it is expensive. I have a life time of drug taking ahead of me. I am pigeon holed as having MS (insurers don’t like me at all) and although my future remains as uncertain as anyone else’s, i do have that ‘MS multiplier effect’ in place!
A diagnosis whilst in some ways is a relief, remains nevertheless as a burden. And i have to wonder, what if i hadn’t had that final thought? Would i have been told “you have had a CIS; try not to worry about it!” and i could continue on as per usual?
Thank you paolo for you response I really appreciate it!
I am really trying to see the positive I know i am alot luckier than other MS sufferers at this point due to the lack of symptoms and i am greatful for that dont get me wrong! I really hope iam in the 30% but i am so pessimistic and as there is much higher chance I have it i cant get it out of my head.
I have been reading about the disease modifying drugs which seem like they can help prevent more damage being made and the earlier they are given the more effective they are. I totally understand they dont want to provide treatment when its not needed due to cost/ side effects but the neurologist said if I was i America I would be receiving treatment now even just after CIS as they have different regulation, this makes me really worry as to why i need to wait for symptoms in the UK until i am offered any treatment? When if i took some if i have a new lesions this could effect my quality of life in the future but they aren’t willing to give me another MRI without more symptoms.
if you don’t mind me asking what symptoms did you have when you was diagnosed and have you had more since?
Sophie i am in the exact same position, a positive mri in 2015 and diagnosis of cis, a few problems since only minor really but there, 2 following spine mri’s and an lp that were all negative, i was so optomistic but find myself on down days doubting the original thoughts of ms, its a massive stress the just not knowing i find, i really believe i would feel better just knowing either way and getting the right meds, nobody wants any illness no matter what but this wait is so frustrating x
Hi Sue, i know thats the worst part not knowing! And now i also have the fact that even if i have more lesions they are not willing to treat me unless i have symptoms that are effecting my daily life. I dont think it should have to get to that stage before they give me medication because in my mind surely thats too late and the more lesions i get the more damage there will be. Its so hard and 5 years is such a long time to have this hanging over! x
