MRI Results

Hi, hope you are all as well as can be. Looking for some advice. I still get very confused with this disease. Diagnosed with RRMS 7 years ago. Though first symptoms were over 3o yrs ago. Over last 2 years symptoms have gradually got worse and my mobility has decreased a lot. I had MRI 3 weeks ago and received results today it says “no new focal lesions and no contrast enhancement suggesting no active inflamation” also goes on to say the lack of change in the appearance is re-assuring. I am now beginning to think that I am imagining my symptoms. So my question is - is it possible to have symptoms worsen when there has been no recent active inflamation. Should also just add i have had 6 MRI’s in past 7 yrs and there is very little change since the first one I had in 2009. Although I have also been diagnosed with Chairi Malformation and also have some mucus retention systs which I suppose could also be contributing to my symptoms. I am due to see me neurologist again in October but I think he is going to think I am imagining my symptoms.

MRIs are a nice thing to have at your disposal, but…

from day one i was told it is possible to have lesions show up on an image and yet suffer no MS symptoms because of them. Equally, you can be burdened with a variety of physical constraints and yet, have unblemished, pretty pictures!

I was left thinking, “so what’s the point then?”

As said, MRIs are nice; They provide a useful element to the diagnosis process (sometimes / usually) and they are good for gathering quantifiable data (the sort of thing that doctors and scientists (aka drug companies) love) which serves little benefit to the person being stuck into the tube.

My neuro likes to meet me annually (even though i am grateful to say i have little change to report). he takes the opportunity to schedule me with another standing order for blood tests, but also the trip to the noisy tube. I like to receive the blood test results and i can collect them online myself, but i tell the neuro that for the MRI, i do not need to know anything about them UNLESS i need to do something drastic, such as modify my DMD taking / choice.

It could be that you are imagining some of your symptoms Violet. Currently i am enjoying the attitude of denying my MS diagnosis (all doctors are quacks getting commissions from drug companies) and so if anything ‘funny’ crops up, i am able to attribute it to something else. I can therefore see how the opposite might be true.

But more likely, is that the MRI picture simply fails to correlate with what you physically feel on a day to day basis.

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Thankd for reply. I can recall when i was first diagnosed neuro said that i will start putting illnesses down to ms. But there is lots things happened since Jan that I know im not imagining like spasms spatisity in my arm and leg. Also my coordonation is very poor. But sometimes i think my mobility id not as bad as i think it is and that i have maybe just lost confidence when walking unaided.

Hi Violet

I think Paolo is right in many respects. MRI is just not terribly helpful for non doctors / scientific types. And often these letters that say, ‘there’s no evidence of recent inflammation etc, etc’ are more confusing than helpful. It doesn’t tell you for example what has been going on in your spine (unless it was brain and spine which they often are not). So many of your symptoms, especially those related to limbs, are probably not going to show up in the brain.

And then there’s the ‘relapses but no inflammation’ thing. It’s not just in your head. It’s not imaginary. Yes, there’s the added problem of losing confidence in ability. And the other big elephant in the room, of feeling bad so not exercising enough, so worsening muscles therefore adding to our own disabilities.

But don’t think you are alone in any of this. Many of us under exercise, partly because it’s flipping hard and initially at least, adds to fatigue. We also have inflammation which doesn’t show up on brain MRI and worry about disease progression.

Don’t feel bad about not understanding the meaning of your MRI report. Once upon a time, medical professionals would have busily corresponded with each other without thinking that it had anything whatsoever to do with the particular subject of the letters (ie us). Nowadays we are copied into all kinds of things that are really not very helpful to you and I.

If you’re bothered that the neurologist or GP thinks you’re imagining problems, try not to. If you want more explanation, then you’d have to ask probably the neurologist for that (good luck there!).

Sue

There is another thing, Violet.

the power of an MRI scanner is measured in Teslas (Ts)…
A lot of the NHS scanners are still only 1 or 1.5 T
It could well be that you need a scan with a 2T or 3T machine to pick up any new lesions if they are not large ones.
To understand a bit better, read:

It could mean going to a different NHS Hospital, or getting a scan done privately, just to maje sure that nothing has been missed.

Geoff

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That’s a really good point. I only discovered recently that MRI scanners are not all equal. When I had an MRI last week, I asked what type/grade the machine was and was told it’s a 1.5 Tesla. Also that the MRI unit is getting a 3 Tesla machine in January. So it will be (relatively) interesting to note the difference on my next scan, assuming I understand what is said in the report that is. I think the upgrade is probably due to the fact that a private company now has the contract to provide MRI services to the hospital!! A good or bad thing?? Better for patients maybe?

Sue

My uncle in Italy is a radiologist. Unless the hospital is using the best MRI machines like 3 tesla then the lesions can be missed. He told me they can hide too. The MRI is only as good as :

a: the radiologist who reads the results

b: The type of strength used in the machine. (I did read Doctor Geoff said same).

My uncle told me it is down to interpretation too.

Another thing, i was told by my neurologist he has seen someone with loads of lesions on their brain, with hardly any symptoms, yet someone with 1 lesion on their spine, who is bed ridden.

There is no ryme or reason with MS.

If you have symptoms dont forget you can get them from Chairi Malformation as well, so you could be being hit by all angles. What are your symptoms out of curiosity?

every lesion i have shown up has been on a 3 tesla i paid for, the other 1.5 showed nothing. xx

Thanks for your comments. Thats very interesting about MRI. Going to look into that. My symptoms are loss of co-ordonation and slurred speach almost like im having a stroke- when im having one of those episodes lasts about 3 hrs and in that time im totally disabled and cant walk. Weakness in arms and legs. Suffer from trigenal nueralgia and nystagamus. Constantly off balance. Horendeous headaches and fatigue. Symptoms go on and on. Had to stop working this year due to it.Chairi Malfirmation and MS have very similar symptoms. Im still waiting to hear if I have to undergo surgery for the Chairi.

I heard a similar version: that the trouble with a spinal lesion is that there is so little unused space in there on account of its being packed with important ‘wiring’ - so there just aren’t many ‘harmless’ places for a lesion to be!

Alison

One of my friends in USA has CM waiting surgery. She has so many issues, headaches, balance issues, dizziness, weakness in her upper body and neck, and even feeling sick.

So i think you might find some or a lot of your symptoms are CM.

She cant wait for surgery.

Like you said the two are very similar in presentation. x