Hi everyone, im new to this forum but thought i would have a go as I have questions of which my consultant seems reluctant to tell me. So here goes, a bit about me. Im 26 and In June 2013 I noticed a numbness within my left foot over the week this worsened and travelled up my left side all the way to my torso, the symptoms also included tight sensations, a burning feeling on my skin, weak limbs, exhaustion and weirdly anything cold touching my skin was extremely painful!! I eventually went to the doctor who aent me straight to the hospital as he suspected a tumour on my spine( a scary thought) thankfully this was not the case but they referred me to see the neurology team, as my symptoms worsened i was admitted to hospital of which I recieved a full MRI immediately, this showed several leasons within my brain and a couple within my spine. I started a 3 day course of IV steriods which really helped things seem a bit more normal. I’m now 7 months down the line still with slight issues but pretty much back to normal, I have just had a second MRI and I go back to the hospital on monday to discuss the results. I know CIS is unpredictable and they can’t say for definite that I will get MS but after reading things on the internet it says i fall into the higher risk category as I have more than 4 leasons and they are in more than one area of my central nervous system! I’m hoping my second MRI shows no leasons but if this is the case where does that leave me? Do they just wait until I have another episode, which could be anytime even years which scares me as alot of the things on the internet say the longer it’s left the Disease modifying drugs aren’t as effective!! Just wondering if anyone has gone through anything similiar?
Hi I had 1 clinical attack but had one enchanced lesion on mri and a few others. Technically this is cis but as only 1 was enchanced it is thought the others came before with no symptoms so a diagnosis of ms was given eventhought mris after showed improvements. I think the mcdonald criteria is worth looking at. People with cis with a high risk can have some dmds straight away so have some questions ready if this is the route you would like to take xxx
Hi I was in a similar situation had a drop foot brain and spinal MRI done which showed lesions in both areas so was diagnosed with a CIS and started on avonex almost straight away as the evidence pointed to me being high risk for converting to MS…I think it depends on your neurologist and where about in the country you live which is ridiculous as everybody should be able to access medication no matter what area they’re in!!..I have had another follow up MRI since my first episode which showed a new lesion (but without symptoms) and I’ve since had an attack of ON so it looks like I’ve gone on to develop CDMS but I’m still awaiting an appointment with my neurologist to confirm all this ( they’re current running months behind with appointment) although fortunately it doesn’t change things for me as I’m already on medication and don’t have to wait!..hope you get this sorted out and keep well…take care Emma
Hi Sarah I just posted you a reply big don’t know where it’s gone!!! Emma x
Hi zoe, thanks for your reply! My original MRI back in june showed 3 to 4 leasons in the brain and a few in my spine but all were relatively small, he showed me on the computer during our last appointment. I am hoping on monday my second MRI be clear with no new leasons, as i originally thought i will be fine if this is th case but after reading your experience II’m now dubious! ( just to let you know im a natural worrier) my evoked potentials test cam back normal and i haven’t had a lumbar puncture, i think ther holding off on that as it’s invasive unlike the MRI. I did look at the mcdonald criteria briefly and it said anyone with a cis that had 3 or more leasons in different area of the central nervous system are at an 80-90% higher risk of getting ms eventually! I have so many questions to ask him of which all are written down so i rememberr, I just hope i don’t leave the hospital on monday more confused than now. If all is clear on the MRI i’d like to know from him a plan of action for the future and not just be left to go on my way and get back in contact when something else happens which could be years but would mean it’s been left for so long. Sorry to waffle on! If you dont mind me asking how long fwas it from you having your first attack to you being diagnosed with ms and were u confused by it all as much as me? xx
Hi emma thank you. I havent been given any medication was basically sent on way, even though a few days after leaving the hospital the same symptoms started on my right side which I told them but they didn’t seem to interested! I live in newcastle upon tyne and my neurologist is a specialist in ms and is also a lecturer on the subject so i guess he knows what he’s doing! It’s the whole waiting in limbo that i can’t stand! Funnily enough my uncle who is my mams brother has just been Diagnosed with ms and his consultant is also mine, he had ongoing symptoms for 13 years before they did anything! This scares me the thought of 13 years of not knowing anything! I hope he can give me some answers on monday! Also is avonex a dmd injection or tablet form? xx
Hi I was diagnosed in 2 weeks, big shock as had not had any symptoms before. I too am a natural worrier and was very anxious after diagnoisis. A yr later in on copaxone which I worried about but find it very easy , I even forget about the injection and suddenly jump up during tea and do it, I never would have believed it before and when I read people saying its like brushing your teeth everyday I thought it would never be like that for me. I tried betaferon first and didnt get on well with it so swapped, so if something does not suit you, you can change.i think for me a yr onwards and in a better physical shape I find the mind and worrying about the future the hardest thing but I read as much as I can, take advice from this forumn and try and take a day at a time ( not easy for me) but I feel that at this stage I am doing all I can to fight this xx let us know how it all goes
Hi Sarah my neurologist also an ms specialist so suppose they all have different ideas…you maybe will be offered a DMD at your next appointment…avonex is an injection!..good luck and hope your appointment goes well…Emma x
Thanks emma and zoe its much appreciated. I’ve written all my questions down ready for monday and I will let you both know how it goes and what news he gives me, fingers crossed. xx
How did it go xx
Hi zoe, not long been back from the hospital still in a bit of a daze, i have now been diagnosed with RRMS!!! Scary!! Cried pretty much since he told me! My MRI he said was excellent and the lesions in my spine have gone which i was so happy about and made me think all was well until he got to my brain and said the lesions I had are still there and there is now a new one in a new place of my brain so even though ive had no new symtpoms since my first relapse the new lesion has given him enough confidence to diagnose me. i’ve decided on avonex injections and i go back in a few weeks to see the ms nurse and for her to show me my first injection. how did u find it and did u get any horrible side effects? xx
Its alot to take in, good news though that you can start treatment early. Be kind to yourself xx
Try posting on everyday living as lots on there take avonex and you will get good advice and lots of lovely people to support you. Remember that everyones ms is different and alot on everyday living have either had ms for a while so its not a representative of some people who are to busy for forums and are still living life to the full. Sending hugs xx
Hi Sarah hope are ok sending hugs (((((x))))) you’ll get your head round it eventually believe me it’s not easy and takes time but you will!..the way I got through it was by thinking ms is not good but better than the other things I had imagined it might have been don’t know if that advice is any good! … I’m too on avonex have been for over a year and was terrified!..especially of the side effects but I’ve not had any apart from headaches!..just take the painkillers regularly…I get my husband to do my jabs cause I’m a wimp but everybody else seems to manage it no bother! Take care of yourself and take each day as if comes not easy i know as I’m the worlds worst worrier honestly!!( ms has helped me put things in perspective!) there’s always plenty support on here it’s a fantastic site x Emma xx
Ah thank you zoe, its appreciated! Thankfully my uncle has been on avonex for a year now so I’ve got someone at the end of the phone to bombard with questions. They said it’s very early stages for me and the MRI didnt show anything of massive concern but advised early treatment can work wonders. Thanks again and you take care too xx
Thanks emma, that’s good to hear that uve just had headaches I get them all the time so very used to them now. Everyone on here seems very open and honest and it’s nice to know others are going through or have gone through the same. Im glad to finally now and not thtink it was all in my head. Take care xx
hi peeps im not new to ms diagnosed 2 yrs, i joined this site last nite n only just joined the 21st century at xmas my laptop was a gift so im a little left behind on whats what, my question is what is CIS and CDMS x
Cis = clinically isolated syndrome Sorry can’t help with the other Gray
thanks gary will google cdms x