I had a 'episode; around 18 months ago and was advised this was a CIS but i am at high risk 90% of MS. Just had a contrast MRI, had others which had lesions. This is showing new lesions and neurology want to see me within the next 2 weeks. Only had MRI last week.
He has seen new lesions on the new MRI, is this MS?
I know i don’t have long to wait just nervous
well, you are right in saying that you haven’t got long to wait.
if it is ms, it’s likely to be RRMS because your neuro will be comparing the new MRI to the one you had 18 months ago.
perhaps, like me, you want to know what to expect from your next appointment,
please understand that i don’t have a crystal ball, but it will probably go like this:
you will get the results of the MRI
you MAY get a diagnosis of ms and if so you MAY be offered one of the DMDs and MAY be allocated an ms nurse.
none of these is that scary except the diagnosis but you are already prepared for that
if you find it hard to get all this out of your head, try mindfulness meditation.
mindfulness will stand you in good stead.
treat yourself to a day of box sets, a good book, coffee with friends,
not long to wait now
It could well be MS - but it could also be one of its mimics. Only your neuro, with your full set of results (MRI/bloods) and clinical history will be able to say.
Try not to worry - and focus on the positive. If it is not MS - brilliant. It is not a diagnosis anyone wants. If it is MS, try to focus on the positives of having a diagnosis and being able to move forwards to management/treatment.
I know that is easier to write than it is to do. Your story is not dissimilar to mine. I was diagnosed as CIS in March 2016 after an episode of numb toes (cleared up with steroids) triggered my having an MRI which showed lesions in my brain, brain stem and spine (both enhancing and dull). I was told it was highly probable that I had MS and that I met the MacDonald diagnostic criteria for dissemination in space/time from that scan. A follow up scan 3 months later showed 1 new lesion (no new symptoms) and so I was diagnosed with “active” RRMS. Having already accepted that my CIS with “highly probable” MS diagnosis meant I basically had MS, I was “delighted” with the final diagnosis as I was keen to start fighting back as soon as possible - and received my first doe of Lemtrada in August.
Please don’t get me wrong - the initial diagnosis of CIS/probable MS knocked me for six. I catastrophised and feared the worst for my physical/mental/emotional/financial future. But by the time I received my diagnosis of active RRMS I’d had time to read up a lot more about the disease, how it can be managed and the latest treatments on offer (and time to shed some tears, drink some wine and punch some things). These are the things I’ve been telling myself:
MS is not a fast track to a wheelchair. Something like 80% of pwMS don’t need a wheel chair 20 years after diagnosis (and there are some fabulous people with MS using wheelchairs to crack on and have fabulous lives)
If you are diagnosed with RRMS (most people are) there are disease modifying drugs. These, combined with the new consensus from the ABN on using them as soon as possible following diagnosis, should shift the statistic above (and may others like it) significantly in our favour. The newer drugs in particular could be real game changers. (e.g. the latest long term results on Lemtrada suggest that it not only significantly reduces relapses (delaying or preventing further damage), but can reverse some existing disability, normalise rates of brain atrophy and delay/prevent conversion to SPMS). These drugs do come with side effects - but they provide options for management. And there are more, better drugs in the pipeline - including for the progressive forms of the disease. I’m hopeful my lemtrada will hold my MS at bay long enough for these to be licenced options (or, even better, for there have been that break through to finding a cure)
There are also drugs that can help with symptoms/relapses - along with alternative therapies
There are things we can do to help ourselves - diet/exercise/vitamins/sleep/avoiding stress
The MS community (on here, Shift:MS and some of thr facebook groups) is a great place for support and information - especially if, like me, you are reluctant to disclose the diagnosis too early to people in your real life and need a place to vent.
Good luck for your appointment. Hopefully it is not MS and there is a kinder explanation for the issues you’ve been having and your scan (and you can go away and forget all about us). But if it is MS, we are here (and Im happy to talk if you want to PM me)
Katy is totally right. MS is not a death sentence. We all are affected differently; I have had it for 20 years and have no disability at all. My last relapse was in January and was double vision that has now resolved. The sooner you are diagnosed the better. The drugs are very effective and will do as Katy said above. Please take care and we are here for you
Well i get my results this week and i have been trying not to think about it, but easier said than done! You are all so supportive on here and have helped me to get through the wait. So a BIG thank you to all on this forum.