Hi I have had rrms for 5 years now In the last few months some of my symptoms have felt much worse - the horrible leg pain and burning, feeling my leg is in a vice and lately my brain fog feels horrendous. I had. V rough spell at.easter and had an mri done recently. This showed no new.lesions from a previous mri in 2014 which obviously I’m very pleased about as obviously my drugs are working?! But it’s left me confused about my daily symptoms. I feel like I’m almost doubting myself as it seems from the mri that these new symptoms don’t exist. Or is that not how mri scan work?? Hoping someone has the knowledge to help me figure this out!
Well MRI doesn’t show all lesions.Most NHS MRI scanners are 1.5 Tesla (1.5 T) A couple of years ago, or so, there was talk of 3 T scanners. Stronger magnetic field, leading to higher resolution and ability to detect smaller lesions. There are now 7 T scanners (even more resolution) but a study reported (blogged about on the Barts blog) showed there were still some lesions missed with 7 T (the definite test is using a microscope on autopsy).
It is good that new lesions big enough to be picked up by MRI haven’t appeared but it doesn’t prove that your symptoms don’t exist…
I’ve been reading that the correlation between lesions and Ms symptoms and severity of symptoms isn’t as clear cut as I thought. Is every relapse supposed to cause new lesions?
There’s spinal lesions that wouldn’t be seen unless you have a spinal MRI and I understand that new lesions aren’t necessarily seen without ‘contrast’. Just things I’ve come across but also important to say, we’re not experts
Sonia x
Never been told which lesions cause which symptoms and this is why we all have our own version of the disease, we’re ike snowflakes
Sonia x
Thanks for those responses. After years with Ms I still fail to figure it out and like you say nindancer we are all so different. I suppose the scan just didn’t give me the definitive answers I wanted! X
MS is a swine for failing to give definitive answers. I’m quite sure that the majority of us at some point have had a time of wondering. Some examples:
- Have I got MS?
- is it RR or PP?
- has it become SP?
- is this a relapse?
- has the relapse remitted at all?
- will every relapse show complete or even partial remission?
- if there’s no remission am I now SP?
- of I’m SP, should I continue on a DMD?
- is this a new symptom?
- do all relapses produce new lesions?
- Is the absence of new lesions a positive thing?
- does the absence of new lesions mean I’m now SP?
- does the absence of lesions mean I’ve not got MS?
- have I really got MS or is it ‘something different’?
- what is the value of MRI/LP/VEP?
- is the MRI machine a high enough spec?
- if I’m SP can I still have relapses?
- if I have PP can I still have relapses?
- is the ‘something different’ I’ve had diagnosed really MS?
- Is this DMD working?
- is this worsening of an existing symptom a relapse?
- should I take a steroid for a relapse?
- is an oral steroid as good as IV?
- what DMD should I take?
- should I take a DMD at all?
- should I change to a different DMD?
- have I made myself more disabled by coming off a DMD?
- what drugs should I take for symptoms?
In short, the list of questions goes on and on and on. MS seems to be both the same disease for all of us, regardless of labelling. Simultaneously MS is different depending on the label of RR, SP or PP (and let’s not forget ‘benign’ which of course is not necessarily as snuggly and comfy or easy as it sounds!) Also simultaneously MS is completely individual, no two of us are the same.
MS is a total pig. Having a diagnosis of MS is not the end of the questions about MS. It’s also a beginning of new questions. The questions never stop. After 20 or 30 years, the questions don’t stop.
Sorry.
Sue
1 Like
Spot on Sue. Excellent post. 
To be honest, I am not terribly bothered about scans and prefer to trust the evidence of what my own body tells me. If you feel worse then you probably are.
2 Likes
Thanks Sue! Thats probably every question I’ve had I’m my head over the years Reassuring that its not mad to have all those thoughts Such a good post. And yes one scan every blue moon doesn’t tell the day to day story of any of our challenges does it I appreciate these responses I really do… Makes me feel alittle bit stronger
[quote=“Ssssue”]
MS is a swine for failing to give definitive answers. I’m quite sure that the majority of us at some point have had a time of wondering. Some examples:
- Have I got MS?
- is it RR or PP?
- has it become SP?
- is this a relapse?
- has the relapse remitted at all?
- will every relapse show complete or even partial remission?
- if there’s no remission am I now SP?
- of I’m SP, should I continue on a DMD?
- is this a new symptom?
- do all relapses produce new lesions?
- Is the absence of new lesions a positive thing?
- does the absence of new lesions mean I’m now SP?
- does the absence of lesions mean I’ve not got MS?
- have I really got MS or is it ‘something different’?
- what is the value of MRI/LP/VEP?
- is the MRI machine a high enough spec?
- if I’m SP can I still have relapses?
- if I have PP can I still have relapses?
- is the ‘something different’ I’ve had diagnosed really MS?
- Is this DMD working?
- is this worsening of an existing symptom a relapse?
- should I take a steroid for a relapse?
- is an oral steroid as good as IV?
- what DMD should I take?
- should I take a DMD at all?
- should I change to a different DMD?
- have I made myself more disabled by coming off a DMD?
- what drugs should I take for symptoms?
In short, the list of questions goes on and on and on. MS seems to be both the same disease for all of us, regardless of labelling. Simultaneously MS is different depending on the label of RR, SP or PP (and let’s not forget ‘benign’ which of course is not necessarily as snuggly and comfy or easy as it sounds!) Also simultaneously MS is completely individual, no two of us are the same.
MS is a total pig. Having a diagnosis of MS is not the end of the questions about MS. It’s also a beginning of new questions. The questions never stop. After 20 or 30 years, the questions don’t stop.
Sorry.
Sue
[/quote] is the reason we have so many unanswered questions about m.s. due to the fact that no-one really knows anything about it!!