MS diagnosis with no demyelinating lesions on MRI

Everyday living
1

Hello all

I was just thinking, there are so often questions on the newly/undiagnosed part of the forum about having no lesions on MRI, or no brain lesions and yet still being convinced they have MS. One phrase often used is ‘I have all the symptoms’.

So, my question to you all is related to how you were diagnosed!

Were any of you absent lesions on MRI initially? Or have only spinal lesions, but none in the brain? Obviously I know that unusually, people can have only spinal lesions but still have an MS diagnosis.

If people were absent brain lesions, but later shown to have spinal demylinating lesions (thus a diagnosis), did you originally have a brain MRI but no spinal MRI?

Or, if you had a ‘clear’ MRI without contrast dye, did you subsequently have a further MRI with contrast which showed lesions?

I know this is very far from a scientific way of finding information about diagnosis - it’s more out of interest and to help those of us who try to advise people who are convinced they have MS outwith any evidence to prove it.

Thanks for reading and if you can tell your diagnosis story it might help others.

For your information, I had an MRI in 1997, it showed demyelinating lesions in the brain and cervical spine yet I was told it wasn’t MS. That was a common thing back in the bad old days before DMD’s. The thought was that as there was no treatment, sometimes it was better to tell a person they didn’t have MS because it could just possibly be a one time relapse with full remission. I have a copy of a report from the neurologist to my GP that said there was evidence of ‘a demyelinating condition’ but ‘we won’t mention MS unless she asks’. I don’t (nowadays) feel aggreived about that, I had 5 years of no diagnosis, I had several relapses, but had nothing available to tell me they were relapses. This was the days before Dr Google. In 2002, I had a worse relapse and was formally diagnosed with RRMS. That was the year when DMDs (beta interferon & copaxone) became available under the ‘Risk Sharing Scheme’.

I’m going to post this on both Everyday Living and PPMS because I’m interested to see if there is a difference.

Sue

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I was diagnosed the first day I saw the MS consultant.

Basically I started showing symptoms, went to GP who was concerned that my sister had MS for around 10 years and also my 1st cousin, so alarm bells started ringing when I started to show symptoms.

My GP rang Neuro consultant whilst I was sitting there the very same day I showed up at my surgery with symptoms.

As soon as she mentioned my symptoms and the fact that my sister and first cousin had MS I was told to go to the nuero clinic the next morning.

The following morning I was sat in front of the MS consultant who had already looked at an old brain MRI scan that I had done about 8 years previous as I was getting intermittent numb hands, the brain scan at that time came back clear so the numb hands were put down to carpel tunnel by the previous neuro who had ordered the old MRI.

However, when this new MS consultant looked at the old brain scan he could just make out a lesion right at the top of the spine, the previous consultant had missed this !!!

The new consultant told me that same day he thought I had MS looking at that old MRI scan, but wanted it confirmed by running new tests.

Within days I had a new MRI on the brain and spine, a lumbar punch and bloods taken.

MS was confirmed by all the new tests within a week or so, even though the MS consultant had already told me to be prepared for a positive MS diagnosis…

I was told I had RRMS, 8 years on I’m now SPMS.

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I’ve had consistent symptoms of MS since 1980 but couldn’t get a diagnosis until 17 months ago. In my teens, they said it was growing pains. In my early 20’s, I was just stressed. In my 30’s, I was just too fat. In my 40’s, it was because I was a smoker. I had my first MRI somewhere around 2006-2008, because they just weren’t available until then (and insurance didn’t cover them!), but nothing showed up on any of them until 2019. My GP did order contrast a couple times, but that was never done until a few months ago and no one ever explained why.

I’ve seen some newer studies where they’re beginning to think that some lesions heal themselves, and I’ve wondered if that happened to me. None of my earlier MRI’s were taken during an exacerbation; they all occurred 2-3 years later. And my spine remains clear. If some lesions do heal themselves, that would explain why nothing showed up after the fact. The only MRI taken during an exacerbation is the one that finally gave me a diagnosis.

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I was lucky (?) in a way because when I first saw a neuro I was smitten by how well he listened to me.

He actually phoned me on my mobile to tell me that I had MS and apologised profusely for doing it by phone because he knew that the not knowing was stressing me out.

Then fast tracked to a MS specialist neuro who put me on copaxone.

Then tecfidera and now still the same but I feel that I am now SP, however just from my own feeling not being told by a neuro.

when I had my first MRI I was actually relapsing.

I’d love to know how you know if you have moved to SP.

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Hi Sue, oh here I go again…some may think! My story is one of the more unusual ones. When I read posts from folk who have no proof on their MRI of lesions, yet have lots of typical MS symptoms, I will sometimes give them my own experience…at the risk of boredom to those who do already know. I apologise for repeating myself, but maybe it will help someone.

But at the same time, I am wary of scaring some folk too.

I try to tell them in a positive way, not to give up, to keep banging on doors.

Here goes;

In 1998, I started to slow down physically. Energy was waning and my mobility was dodgy. I’d trip over fresh air!

I waited several months and just thought ‘Oh pick your feet up girl?’ But the falls happened daily and some were quite spectacular!

I fell as I was one step off a canal bridge, the keeper had already hit the ‘open’ button, to allow boats through. Luckily he saw me and hit the stop button quickly.

Then I fell in glass porch and put me choppers through me lips…that smarted…felt as if I had smashed my entire face!

Anyroad, long story short now…enough of the fun bits!

I saw neuros at Huddersfield, Halifax, Wakefield and Dewsbury hospitals. No…nowt on 4 MRIs, LPs, EMGs and pints of blood tests. I presented clinically as having PPMS…foot drop, stiffness and spasms in legs and arms, fatigue, bladder and bowel accidents.

Some years down the line, another neuro said I had HSP…hereditary spastic paraplegia…similar to MS, but different in that it is always genetic and carries a 50% chance of being passed down. Both my parents had passed away and there were no similarities in any of my family…not even in my 22 cousins!

A genetic test was performed, but it came back negative, so that diagnosis was quashed.

Move onto 2019 and I was referred to a neurology specialist centre in Liverpool. I saw a great doc there, who carried out tests for the rarer conditions, which cause paraplegia and what did he come up with? Spinal PPMS. I only have lesions on my cervical and thoracic spinal cord.

So there you go guys…have a good day.

Boudsxx

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was thinking about this.

I paid to have MRI and the results were sent to my neurologist. the radiologist said there were signs of possible demylinating lesions but he felt on reflection it was more down to my age he saw my birth date of 1951. this was on the brain MRI.

I never once thought of MS. I just wanted to be well again, i thought perhaps i had caught something in brazil as it started with blindness 2000 on holiday. ALTHOUGH from my fathers death 1997 i did have most odd things going on, dropping things constantly, bashing myself, off balance etc etc.

anyway over time i had lesions on my spinal cord 3 in different places. a very bright one was dismissed by radiologist as an ARC on the film, but my neuro dismissed that as baloney.

so after 2 VEP tests and several spinal MRI with possible lesions and 2 vep tests showing definate issues for MS I WAS diagnosed. with progressive MS.

the point is though no matter what you say to a lot of people about getting a diagnosis some just only ever focus on MS. they wont even entertain they dont have it. I was never like that. I paid 4,000 to breakspeare clinic to be tested for lymes and other things. I would rather not have diagnosis of MS.

My story is very similar to BOUDS. xxx

P.S. my uncle in italy is a radiologist and my mother send my films to him and he said their were demylinating lesions in my head and spine at the time, he did not agree it was my age.

My neuro told me he had learnt a few things dealing with me that not everyone has standard MS systems. they dont.

i know how frustrating it is to be told no lesions on MRI when they are clearly lesions on MRI but spinal in the main.

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I personally am not sure peop!e are hell bent on wanting an MS diagnosis. I sure as hell dont want one. I think like all the personal experiences i have read on here from those diagnosed and undiagnosed, people are just so tired of symptoms and hang on to the fact that maybe a diagnosis of something may bring treatment that might help them feel less ill. And also in a safe environment where they arent being treated like hypochondriacts. Some situations mean people cant discuss how they feel so opening up honestly on a forum is the only out for them to share their thoughts and fears. I am more aware now of what i say here when asking qiestions or just venting. Sorry just wanted to add that in, although it is off main topic.

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When my consultant said I was now SPMS about 3 years ago I asked what this was based on ?

He said the transition from RRMS to SPMS is purely gauged on MS symptoms getting worse without any signs of relapses.

I might be wrong but I don’t think theres a specific test to say a person is now SPMS as opposed to RRMS, please correct me if I’m wrong.

I 100% agree with Pixie that being “hell bent” on getting my MS diagnosis couldn’t be further from the truth.

After seeing first hand how MS had effected my sister and cousin, the last thing I wanted to hear was “you have MS” !

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maybe i should have said it differently. i know quite a few people who are just focused on having an Ms diagnosis. i dont know why. I never joined a specific group for MS until i had been diagnosed no not true until my doctor told me it was a good chance it was MS and to join. But some people just dont want to even contemplate it could be M.E., FIBRO, FND, lupus etc. I wouldn’t want a diagnosis of Lupus it killed my father.

Poor choice of words on my behalf, but i have been with this darn disease for 21 years so i think i say it with experience and talking to many people over the years. It can take years to be diagnosed and its good to keep an open mind. I always said to myself if it is MS one day it will show itself and it did. but that was long time coming.

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Maybe getting my MS diagnosis so quickly is an exception ?

From what I was told by the MS consultant at the time of diagnosis, was “all the pointers were there, it just needed confirming”.

Just looking at an old MRI brain scan that caught a small potion of my spine was enough for the MS consultant to say " be prepared".

I had it all the tests done and a confirmed diagnosis in less than 2 weeks.

Between 3 and 6 months after being diagnosed I actually thought I had been incorrectly diagnosed, simply because my symptoms had almost disappeared, I was easily back to 99.9% fitness.

I actually spoke to my consultant and expressed my concern that I think I had been incorrectly diagnosed, he said it’s very common for initial symptoms to settle back to “normal”, but “you do have MS”.

8 years on, and how right he was in all of his advice and diagnosis.

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I should have added that I didn’t even consider MS until about 20 years ago. Prior to that, we just had no clue what was wrong, because I only have major exacerbations about every 4 years, and each one had been very different from the ones before. It wasn’t until 2007 that there were enough signs to point to a neurological disorder.

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With definite m.s. symptoms in the ‘early years’ family medical history was checked and because my father was dx’d with schizophrenia and had been in a mental hospital I was labelled as having mental health problems - all my physical problems said to be ‘all in the mind!’

After a number of years getting increasingly frustrated I changed GP - new one sent me for an MRI scan and results plus past medical history confirmed that I had m.s.

Father died few years later - recently got his medical notes - clearly he had mental health problems for a time but reading that ‘patient complaining about weak left leg’ and 'patient may have ‘suffered a slight stroke as lost use of his arm’ sent alarm bells ringing.

After leaving the mental hospital for the next 10 years he was unable to hold down a job - suffered periods of extreme fatigue - had great difficulty walking etc. possibility that he had m.s. never considered! He died aged 53.

It continues to concern me that he may have had m.s. but because of his earlier mental health issues he didn’t get the care he deserved.

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I think that happens a lot. My son’s currently having trouble getting any help because he’s dangerously obese. It’s like the doctors look at one issue and then blame it for everything.

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Hello Pixie

On the one hand, I completely agree with you that no one in their right mind wants an MS diagnosis. But then on the other, some people seem to wish it, often as you say, simply to get an answer to their symptoms. Many people live in ‘limbo’ for way too long and all they want is something, somehow to explain why they feel so awful. They want to not feel (or have other people believe) that they are hypochondriacs.

Then there are a few people who to many of us don’t have anything like MS but who are insisting that they do.

I feel desperately sorry for both. It’s horrible knowing you are ill and/or becoming more disabled. Awful the way some people are treated by so called ‘medical professionals’. Plus, to be in the situation of knowing you could have MS, or indeed some other neurological disease, in this time of the pandemic, is worse still.

It’s not off the main topic, I initially posted because I wanted to be giving the undiagnosed reasonable information. Not always knowing peoples stories about their diagnosis meant I honestly didn’t know how common it might be to have clear MRIs yet later to be diagnosed with MS.

So thanks for posting, this is the very reason why I was asking the questions.

Sue

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Your fathers story is so sad. As is your own anonymous. Having MS undiagnosed because a parent has a mental health diagnosis is awful. Spending years with physical problems, all put down to mental health is honestly reprehensible.

Equally, having obesity as a bar to physical diagnosis of whatever kind is simply wrong and unfair Norasmum. I hope your son gets a sympathetic doctor who can see beyond weight soon.

Sue

1 Like
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Your stories are all very interesting. The vagaries of people’s diagnosis is so disparate. From a speedy diagnosis based on symptoms plus family background (jactac), or just fast diagnosis because it coincided with a relapse (Carole), to long and slow based on the problems of primary progressive disease not always showing clear brain lesions (Bouds, CC and Norasmum). Sometimes it doesn’t matter how often we hear a diagnosis story, there are bits we haven’t heard before, so don’t worry about repeating yourself Bouds (et al).

It definitely seems to me that the diagnosis of PPMS can be the trickiest of all. If you are MRI’d during an actual relapse, the lesions flash up brightly so it’s clearer. But PP is so different. I did try posting this initial thread on the PPMS part of the forum but (I assume) the moderators didn’t want the same post in two places. A shame I think because there are plenty of people with the progressive variety of MS right from the start who have the greatest difficulties in being diagnosed.

I think that given how many people do seem to have lesions appear, then vanish, never appear in the brain, or just have long slow diagnosis problems, it’s perhaps dangerous to make assumptions about people’s likelihood of being diagnosed with MS. I shall bear all of your stories in mind when looking at the posts from people who are undiagnosed, in limbo, desperate for a diagnosis of some kind.

I don’t think there’s ever any clinical evidence that RRMS has changed into SPMS. There aren’t any signs on MRI or any specific changes on physical examination. The danger many of us with the RRMS initial diagnosis is that we spend years just wondering ‘is this now progressive?’ The remission from relapses seems incomplete or nonexistent. Sometimes it’s so slow it never feels like remission, even when it is.

For my part, it was assumed about 4 years ago that I had become secondary progressive, after 20 years with RR. Then I had a relapse. It coincided with an MRI, so showed up as flaming bright inflammation in the brain. (It also coincided with my having fallen over and scraped my face along our driveway so was also a gorgeous visual picture!) Subsequent to this, and having very clear remission from this relapse, it was determined that I had Progressive Relapsing MS. So I went from RR to SP then to PR. This then meant I could qualify for DMDs again. Sadly I had run out of options due to side effects from everything except Copaxone. So started on that (again), but this time came up in horrific ISRs. So stopped that. Now I just have to hope for no, or few and mild, relapses.

Thank you all for sharing your diagnosis stories. If there are others who also want to share theirs, please do. It helps so many people when we share experiences. It’s one of the greatest things about this forum (quite apart from being silly with other like minded fools!)

Sue x

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iHi CC, my daughter has been diagnosed with Lupus recently.

And there was me hoping beyond hope, that I didnt pass HSP down to her and now she’s got this.

Lupus is such a complicated condition…the way it can affect people. Yes I do know it can be fatal too.

Daughter came to live back home last Sept…she was in a terrible long lasting attack of lupus. She was intending to stay home for tlc, but got engaged and moved in with her fella. They are getting married in June! It all seems a bit quick and I wonder if there is something she isnt telling us.

A neighbour of our’s has had lupus for over 30 years…she’s in her 80s now.

Our daughter’s fella has kidney disease…what a lot we are!

Boudsxx

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Good post Sue.

Boudsx

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Ta

S x

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I still get letters describing my MS as either :

Transitional

SPMS

SPMS (With Relapses)

The last description I find odd, (SPMS with relapses), because I’ve never knowingly had a relapse, not even when I was RRMS.