Possible relapse 😕

Hi guys! I have recently had some new symptoms and ms nurse agrees it could be a relapse. She sent me for a head mri. Is it normal to sometimes just have head mri and not the full head and spinal cord? Also no contrast? Ive had ms for 3 years but this is the first possible relaspe since my diagnosis so this stuff is still a bit new to me! Any info would be much appreciated!

Hi Sarah, this probably won’t help much but strangely or not I think that in 16-17 years I’ve only had head scans the outcome of each was to say ‘no change’. To be honest I’m not quite sure when a worsening of symptoms is a relapse or simply a worsening of existing lesions - if you see what I mean. My symptoms have got worse this last year but I suppose they are not new symptoms


The symptoms you report may indicate that the damage is being done in the brain

For example if it is eye related an MRI of the spine wouldn’t find the cause.

However problems walking could be brain or spine.

MRIs are not used routinely after a suspected relapse in my area of the U.K. I had not seen my consultant for over 3 years until June and even though I thought I merited an MRI before the appointment as I had deteriorated significantly he only arranged it after the consultation and it only happened on Friday!

Practice does not seem to be consistent and obviously COVID has messed things up further.

My annual MRI’s are always just the head. I have no issues with mobility or anything else and it was ON x2 that led to my diagnosis. I’ve been relapse free since then, 5 years.

I feel the same as I am not 100% sure its not just worsening of previous symptoms, its just a guessing game sometimes!! It’s the same leg that i had a bit of an issue with before in my previous relapse, but this feels different as its affecting below the knee which is new. But thankfully i am able to walk ok, just feels like my leg is made of concrete!

When i was diagnosed with ms I was living in Spain and I had routine of brain and spinal cord mris every 6 months among other appointments, but since I moved back to Scotland I think I’ve one appointment up until now and ive been back a year! And this was my first Mri in a year and a half.

I was a bit concerned because the issue is my leg and I thought that would mean it should be spinal cord and brain mri, but perhaps because it isnt affecting me to walk much then its not necessary?

5 years thats encouraging to hear!! May I ask what your treatment is? I’m on copaxone and have been relapse free since 2020 (until now maybe!)

Hi Sarah, I’m on Tecfidera.

I tried Tecfidera for a couple of weeks but I was very ill with it, and I quickly gave up because I was in a new job and couldnt afford the time off :sweat_smile: I am tempted to try it again soon though. Do you mind me asking if you were unwell at the beginning? I felt like I had the worst food poisoning x100!!

Ive been on Tec for nearly 5 years and aside from some flushing when i just started (which went away after a few weeks) it’s been super easy to use. One tablet with breakfast and dinner and no side effects at all. I’m not a big eater first thing in the morning, so i tend to take mine with a smoothy or even with just a glass of water and have never had any problems. Bloods every 12 weeks to measure Lympho count and its that easy. I’ve been relapse and MRI clear since i started so i would thoroughly recommend it.

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Hi, haven’t been on here for a while so sorry this is a bit late but in case it’s still helpful. I pushed to have head and spine done for my annual MRIs as I have had tingling in legs and feet in the past so didn’t see the logic in only scanning my brain! They agreed luckily but it took me to raise it to get it changed. So depending on where your symptoms are/have been it may be worth you doing the same.

I’ve taken tec for 3 years now. I still get flushing I’d say on average every other day. It’s made my hair break really easily which I find immensely annoying. On the plus side I’ve technically had no relapses since being on it and generally feel very well. I say technically because nothing’s changed MRI wise but I have had a few symptoms come and go.