Hello everyone Had my first neurologist appointment today and he’s diagnosed me with a CIS. He also wants to repeat the MRI and says if there are any new abnormalities he will refer me to ms specialist. Just wondered if anyone else has been in a similar situation and if so how everything is going. Thanks in advance Helen
Hi Helen,
I was initially diagnosed CIS in March 2016 and was then formally diagnosed with active RRMS in June 2016. My understanding is that if your scan shows just the lesions causing your CIS then there is a 70% chance it won’t translate to MS. However, if your scan shows more lesions then there is a 70% chance it will translate.
I initially saw a general neuro following an episode of numb toes. When my scan showed lesions in my spine (causing the numb toes) and additional older lesions in my brain and brain stem the General neuro transferred me to an MS specialist.
It was explained to me by the MS specialist that, although officially diagnosed as CIS, I fit the MS diagnostic criteria at that stage as the MRI showed both dystemination in space (location of lesions) and time (simultaneously showing enhanced active lesions on my spine and old ones elsewhere). Transferring to the MS specialist neuro at this stage allowed us to start planning for treatment ASAP (this all started in March, I was formally diagnosed with active RRMS in June and I start Lemtrada on Monday) and access to the MS nurses. The specialist MS neuro (who I saw privately) asked my GP to refer me back to his NhS books for treatment. This took 3 months. In the meantime I had a further scan that shows one new lesion and allowed my “active” RRMS diagnosis (qualifying me for Lemtrada). The private health cover fell away as soon as my CIS diagnosis moved to RRMS.
So what I think I am trying to say is that if your MRI shows more lesions than the ones causing your CIS symptoms, there may be benefit in transferring to the specialist MS neuro sooner rather than later (especially given referral times). Additionally, if you are keen to pursue a DMT for your CIS this may be better managed by the MS specialist team (FYI - I decided against this as I was pushing for lemtrada as my first line DMT so didn’t want to start on one of the less effective ones whilst CIS. Given my scan (which showed multiple brain lesions (including dawsons fingers), brain stem and all down my c- spine and t-spine (despite only having had numb toes) my diagnosis felt inevitable for the start)).
im conscious that all of this is based on my own personal experience of a CIS diagnosis - and that different hospits have different practices and that the medical facts of your CIS diagnosis could be completely different to mine - but thought it might be helpful to share. Fingers crossed your CIS is just that - and isolated event – and you can push MS from your mind.
xxxx
1 Like
Hi Katy I have been fine following CIS for a year just recently a deafness to right ear but not sure if related. How many leisions did you have on scan and what symptoms have you had. My post is above when it started but don’t be worried about my recent symptoms as I think I am being paranoid which does happen and warranted I think xx
Sorry lenny too original poster
Hi Empielou
On the last Wednesday on February this year I noticed I had numb toes for a few days on my left foot. I thought my new high heels were too tight and/or that I’d allowed my feet to get too cold standing on a chilly train platform in ballet pumps. After a couple of days I noticed my perenium (in my groin) was also numb - and initially blamed this on an uncomfortable seat in a spin class. It didn’t really bother me - and I was still going to work/ the gym etc as usual. I mentioned it to my boyfriend who suggested I’d pinched a sciatic nerve so I looked up a stretch to release - and the lovely Dr Google (not a source to be relied upon - save for scaring yourself silly) suggested I had something called Caude Equina. This is where the vertabral structure of your spine pinches your nerves and is classed as a medical emergecy requiring immediate surgery. As I’d spent the last couple of days in a heavy weight lifting session and falling on my @rse on an ice-rink learning how to curl and the numbness was also now in the toes on my right foot I stressed and called the Dr who sent me to A&E on Sunday night where I was kept in for observation and an MRI on Monday morning.
I felt like a total hypochondriac/fraud in hospital as the only thing that was wrong with me was was this numb sensation in my toes and groin. I wasn’t in pain, could still walk/balance on one foot etc and had no issues bladder/bowel - or other issues like fatigue.
The MRI (which was of my lower spine only) ruled out caude equine but showed I had “two T-2 hyperintensities suggestive of demylination on T11/12”. This sent me running directly to the first neuro I could find (two days later - I was lucky enough to have private healthcare insurance through work) who told me I had dodgy reflexes on my left leg and ordered a full scan of my CNS with and without contrast - and a zillion blood tests.
I spent the next week obsessively googling MS (and related conditions) and was praying for blood tests to show vitamin B12 deficiency or, if not, for the scan not to reveal more lesions so even if it was CIS I was in the “70% chance ts not MS” camp (I mean - how could it be? I was so fit and well…)
Anyhow, to cut an increasingly long (sorry!) story short my scans showed I had numerous lesions throughout the brain typical of MS, including dawson’s fingers, a single lesion on the brain stem, lesions on every section of my C-spine (save for clever C-4 who’d managed to keep clean) and three on my t-spine (including the two identified on that first scan which were “enhanced” with contrast and were the course of my numb toes).
I was proscribed 5 days of steroid tablets which worked quickly and resolved all the symptoms - and referred to an MS specialist neuro for diagnosis. I saw him the following week (mid-March) and he confirmed the CIS diagnosis (and the high likelihood of MS). A further scan three months (June) later showed one new lesion (I’d had no new symptoms) and a diagnosis of “active RRMS” was confirmed. The scan also showed that a number of my existing lesions had become smaller - so my body is clearly trying to help itself out which I’m delighted by.
I’m obviously not delighted by the diagnosis (in fact, at the start I was devastated and couldn’t relate to it at all) - but I am hugely grateful that (i) to date, the attacks seem to have been bits of my brain I don’t use (!) and that I have sufficient neural capacity to work around the damage sustained; (ii) my process to diagnosis has been, compared to many, pretty smooth and fast and; (iii) that has allowed me to move swiftly on to treatment - to help me retain that lovely neural reserve that has been looking after me to date.
The next stage for me is Lemtrada which I start on Monday.
Apologies - that is a much longer narrative than I meant to write - but I know earlier this year I was keen to understand the details of other peoples experiences, to try and make some sense of my own situation.
Fingers crossed your CIS is just that. Good luck (and please feel free to ask any questions - I have got to the position / positive mind set Im now in from the support of these forums)
xxx
Hi Empielou
On the last Wednesday on February this year I noticed I had numb toes for a few days on my left foot. I thought my new high heels were too tight and/or that I’d allowed my feet to get too cold standing on a chilly train platform in ballet pumps. After a couple of days I noticed my perenium (in my groin) was also numb - and initially blamed this on an uncomfortable seat in a spin class. It didn’t really bother me - and I was still going to work/ the gym etc as usual. I mentioned it to my boyfriend who suggested I’d pinched a sciatic nerve so I looked up a stretch to release - and the lovely Dr Google (not a source to be relied upon - save for scaring yourself silly) suggested I had something called Caude Equina. This is where the vertabral structure of your spine pinches your nerves and is classed as a medical emergecy requiring immediate surgery. As I’d spent the last couple of days in a heavy weight lifting session and falling on my @rse on an ice-rink learning how to curl and the numbness was also now in the toes on my right foot I stressed and called the Dr who sent me to A&E on Sunday night where I was kept in for observation and an MRI on Monday morning.
I felt like a total hypochondriac/fraud in hospital as the only thing that was wrong with me was was this numb sensation in my toes and groin. I wasn’t in pain, could still walk/balance on one foot etc and had no issues bladder/bowel - or other issues like fatigue.
The MRI (which was of my lower spine only) ruled out caude equine but showed I had “two T-2 hyperintensities suggestive of demylination on T11/12”. This sent me running directly to the first neuro I could find (two days later - I was lucky enough to have private healthcare insurance through work) who told me I had dodgy reflexes on my left leg and ordered a full scan of my CNS with and without contrast - and a zillion blood tests.
I spent the next week obsessively googling MS (and related conditions) and was praying for blood tests to show vitamin B12 deficiency or, if not, for the scan not to reveal more lesions so even if it was CIS I was in the “70% chance ts not MS” camp (I mean - how could it be? I was so fit and well…)
Anyhow, to cut an increasingly long (sorry!) story short my scans showed I had numerous lesions throughout the brain typical of MS, including dawson’s fingers, a single lesion on the brain stem, lesions on every section of my C-spine (save for clever C-4 who’d managed to keep clean) and three on my t-spine (including the two identified on that first scan which were “enhanced” with contrast and were the course of my numb toes).
I was proscribed 5 days of steroid tablets which worked quickly and resolved all the symptoms - and referred to an MS specialist neuro for diagnosis. I saw him the following week (mid-March) and he confirmed the CIS diagnosis (and the high likelihood of MS). A further scan three months (June) later showed one new lesion (I’d had no new symptoms) and a diagnosis of “active RRMS” was confirmed. The scan also showed that a number of my existing lesions had become smaller - so my body is clearly trying to help itself out which I’m delighted by.
I’m obviously not delighted by the diagnosis (in fact, at the start I was devastated and couldn’t relate to it at all) - but I am hugely grateful that (i) to date, the attacks seem to have been bits of my brain I don’t use (!) and that I have sufficient neural capacity to work around the damage sustained; (ii) my process to diagnosis has been, compared to many, pretty smooth and fast and; (iii) that has allowed me to move swiftly on to treatment - to help me retain that lovely neural reserve that has been looking after me to date.
The next stage for me is Lemtrada which I start on Monday.
Apologies - that is a much longer narrative than I meant to write - but I know earlier this year I was keen to understand the details of other peoples experiences, to try and make some sense of my own situation.
Fingers crossed your CIS is just that. Good luck (and please feel free to ask any questions - I have got to the position / positive mind set Im now in from the support of these forums)
xxx
Thanks for the replies. I guess all I can do is wait for the second MRI and see. Although I’m not sure how I will get the results of it as next neuro appt not for 6 months! It’s the waiting that makes this all so much harder isn’t it??? Thanks Helen
You can ask the Secretary to send a copy the report to your gp. I know that gps might not be up to speed with ms, but it might help you to know what is going on.