MS diagnosis with no demyelinating lesions on MRI

Everyday living
21

I think the neuros have painted themselves into a corner with these m.s. categorisations because they’re inaccurate!

I wonder how many people dx’d with ppms experienced long forgotten m.s. type episodes - how many of us have bits of us going steadily downhill while other bits of us recover - i.e. we’re a combination of rrms/spms/ppms ??

Also (not sure if I’m right on this!) many people who have MRI scans for non m.s. related conditions are found to have m.s. type lesions in the brain but no corresponding disability.

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22

Do you guys have the pin-prick test over there? I call it the “cattle prod test”, but it’s where they stab you with various needles to see your reaction. Anyway, in spite of having lost partial feeling in all parts of my body years ago, I passed that test back in 2007 and again in 2019. That was part of the hold-up in my diagnosis, because “they” kept saying that I would have failed the test if I really had MS.

23

Thanks Sue for asking the original question. Lots of interesting answers already. I read a very recent scientific paper on a variant of MS - diagnosed at autopsy but where there are no white-matter lesions shown on MRI. I’ve tried to re-find the paper but it is currently eluding me …

24

I was diagnosed as a result of being hospitalised with my ‘big’ relapse. Having said that, I had gone to GP in the November 2017 having had numb chest, armpit and nerve pain in wrist on one side and was then on wait list for Neuro. In the summer that year, I had been working a stressful job in a kitchen catering for 300 plus people a day during very hot weather and looking back, had got ‘clumsy’ dropping things and feeling generally non specifically unwell. Those numb feeling disappeared by early 2018. In March 2018 I had an emergency bowel resection due to developing a sudden, acute strangulated bowel which really messed with my head as well as my body! Just after the op, I got nerve pain in left hip and leg but assumed this could be from the op. The pain got worse and worse behind my knee so I got checked out for DVT and actually had a little one (now realise the pain was MS related as I still have it). Eventually, in the July, my first Neuro appt came through…BUT then I started tripping over my right foot - which I thought was due to being rubbish at walking in flipflops. Then I couldn’t wee, went to A&E and had catheter fitted for a week, the idea being it would be removed after 7 days to see if I could wee again. Before that week ended, I lost use of right leg altogether and kept losing balance so went to A&E again. Was given IV steroids and it all improved massively.

Was given definitive diagnosis of RRMS in the November of 2018, after 2 MRI, Lumbar Puncture and ruling out other conditions.

Like Bouds, I only had lesions on my spinal cord, one of which was lit up like Blackpool!

Investigations concluded I have probably had MS for 25 years at least, history of 10 x vertigo, 2 x blurred/black hole vision, 2 weeks of burning ankles, various random numb tingly patches for a few weeks here and there, and so on.

Now have symptoms that never remit, and new symptoms including swallowing problems, TN type facial pain, severe deep ear and neck pain and headaches, deterioration of left leg and hip with spasms, pain and a rolling to the side foot, constant bladder leakage and/or urgency and/or retention and more…but have had stable MRIs since diagnosis.

MS certainly is a funny beast. Trouble is, my MS team rely on MRI and if nothing showing, then they tend to say my issues are not MS related. GP tells me to go to MS team.

Result - no one wants to help, so I’m just feeling worse and worse!

25

morning Bouds, my dad had lupus and my grandad had parkinsons, i had a good choice lol, oh and grandmother RA. i am so far the only one in a family of six children with MS long may it last that way. although we are all grown there are grandchildren etc.

dad had lupus for years. he often reminded me of me, now. he would struggle to walk and he had purpura as well but anyway it was a long time he had it years until he finally got very sick with it. now with new drugs its much easier to deal with.

I expect your daughter just wants to get married and start to have a life with some one she loves. i think at the moment life is so uncertain why wait.

oh to top it all dad got cryoglobenimia. we thought he got it from Xmas Island when he was there when the tested the hydrogen bombs. the RAF/MOD said he got his lupus from that but we know that is bogus.

I am tired to be honest. tired of battling tired of the way things are turning out around me. I would love to hibernate for a year lol. xxxxxx

26

hi Cracowian yes i heard about that the MS related conditions with no disability. I also was told some people can be bed ridden with no recent lesion activity.

I was also told that having high contrast MRI waste of time, as you can have 1 over a week and every day a different answer. sometimes a lesion on spine for example can move around so it cannot be picked up, this was from someone in australia, a radiology if i remember right.

Lesions can hide in the spine. now you see me now you dont.

I think MS should be totally reviewed. I often wonder how come so many neurologists who claim to be experts all sing from different hymn sheets.

every illness affects everyone differently no matter what it is.

when you are dealing with sensitive equipment like MRI there are so many variables, and it is also down to the strength of the machine.

so many weeks,months,years lost waiting for answers. the macdonald criteria does it really work for example for PPMS?

i THINK its time the neurologists started to work together rather then all having their own ideas and agendas.

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Hi noras mum, my first test, stab into my shin with a needle and my foot no response (i.e. i never felt it and he had made me close my eyes) is what made my neurologist think i had MS from the get go, he just never had all the tests in right sequence for MacDonald criteria at the time. seems PPMS does not work to a sequence lol.

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to respond to Crazy C’s post - I disagree re neuros singing from the different hymn sheet.

Reckon they’re all singing from the same hymn sheet - problem is that hymn sheet is wrong!

We could do with some lateral thinking.

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29

I’ve long been opposed to the McDonald criteria. No other illness makes you jump through so many hoops to get a diagnosis. I could understand maybe not wanting to put you on DMT’s until lesions show up, but they’ve now proven that many MRI’s aren’t actually strong enough to show MS lesions. They have us running in a nasty circle.

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30

i personally have PAID to see 3 different neurologists all supposed to be experts in the field. each one of them contradicted the other. cost me about 400.00 to find out nothing i didnt already know lol. the only person i have seen who seemed to know what she was talking about was Dr Munro at breakspeare clinic, she gave me a differential diagnosis of progressive MS and a co infection of lymes in 2012. I had given her several MRI discs as i had paid for about 3 over time. she sent the paperwork and findings to my GP who dismissed it all. also Dr Munro is the only person who actually gave me a full neuro check it lasted for ages and was exhausting. Her husband had MS actually. shame she isnt classed as a neuro as boy she knew the subject.

ps. i am talking about ALL Neurologists including abroad. for me MS is MS isnt it, so why so many variables…

31

I asked the radiographer at my last MRI whether a higher spec scanner is really so much better. He said that most often the 3T machines were used to get the same quality scans as the 1.5 or 2T machines, only faster. And of course for a much greater cost. So supposing you are claustrophobic and an open scanner isn’t available, a 3T machine would be more tolerable. But in general a 1.5T or 2T scanner is quite sufficient. Plus artefacts (a kind of defect in the scan image) are more likely with 3T machines. This radiographer told me that mostly the 3T machines were used to get the same quality scans as the 2T. Granted he might have been trying to give me confidence in the scan I’d just had, but I doubt it.

So I feel that my MRI scans have been fine, suitable for the job and give decent quality images. Admittedly, I’m far from claustrophobic, I have a tendency to fall asleep in MRI scans. It’s just as well, I think I’ve had at least 10 MRI scans over the past 24 years, possibly more!

Many people seem to be quite critical of the neurologists they’ve seen. I think I must have been very lucky as the neurologists I’ve seen have in general been great. I was lucky enough to be a patient of lovely Professor Giovannoni for a few years immediately after diagnosis. But the others I’ve seen have been pretty fabulous too. Granted, they often have differences of opinion, but that’s true of all professions.

This doesn’t make it any easier if you’re fighting to have your MS properly diagnosed and you have a neuro who’s stuck in the mid 20th century. Or if you want DMDs for RRMS, or for CIS (which I don’t really believe in, I think most often it’s RR waiting for another relapse, or PP showing few brain lesions). As I’ve said before, I think it’s people with PP who have the biggest hurdles to jump before getting their MS diagnosed. Which is probably why so many of you’ve encountered neurologists who disagree with each other and whom you have the least confidence in.

Sue x

32

All of my MRI scans have been done, without contrast, including my last one of my thoracic spine, which the neurologist requested contrast for, but the radiologist overruled. :frowning: In a month or two I’m supposed to be getting an MRI scan on my neck, which will be my 5th MRI since 2020!

33

Ssue, what I still don’t understand is how someone is diagnosed with PPMS from the outset? Surely the fact that symptoms have led to someone seeking diagnosis means there must have been an initial ‘relapse’ ? As in something has caused the initial damage to occur?

SPMS I understand, as in relapses cease but damage progresses and disease progresses due to the exising nerve damage.

But PPMS - just how? How does a neuro know that there won’t be a relapse a week after diagnosis!

34

All mine have been done both with, and without contrast, which I don’t really understand the point of! I’ve just had what was my 5th since 2018. I always wonder what is the point of doing the ones without contrast, if they are also going to do them with!

35

I think it is a case that the relapse never remits, ie the course is progressive. PPMS has less inflammation than in RRMS. Inflammation damages myelin and causes a lot of symptoms whilst the inflammation is active, but as the inflammation subsides so too do the symptoms. Hence the remission. The inflammation may leave some damage though (seen as lesions, which may or may not repair fully) and some symptoms.

Because PPMS is less inflammatory it generates fewer lesions, especially fewer in the brain, and the spine seems to be affected primarily. In PPMS there is more axonal / neuronal damage though, going on, which seems to be independent of lesions.

There is damage going on in RRMS / SPMS and PPMS that is not picked up on typical used MRI scans. Lesions are the tip of the iceberg. So called normal-looking white and grey matter, which is actually not normal, but undergoing degeneration is not picked up. Brain atrophy (loss of brain volume) seems to be the outcome of that, which is picked up by comparing MRIs over time, but does not get considered at all in the McDonald criteria.

There are some special research MRI scan types available which do seem able to pick up more of this ‘hidden’ damage, but these are not currently used outside of research for the typical patient turning up with MS type symptoms wanting a diagnosis.

36

The radiologists do seem to over rule the neurologists. It happened with me too. The contrast chemical is not completely benign - some of it remains permanently in the brain, and this is why the radiologists seem to only use it if they think it is absolutely necessary. Without it, however, you won’t pick up active inflammation. The inflammation is transitory - gone, or no longer detected by the contrast within 3-4 weeks typically of the initial attack. Given the long time lags between people getting symptoms and getting an MRI scan, most will be too late to pick up the active inflammatory stage.

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37

T3 machines are a rare beast. the fact a lot of MRI are done in porta sheds as i call them means you would not have a T3. the T2 is adequate i had all mine on T2 in a clinic. my uncle told me its not so much the machine its the radiologist who interprets the results that count. Also you could do a slice say at 1cm and the lesion is just below it.

anyway i have never criticised MY NEURO, only the idiots who came as second and 3rd qualified to say whether i had it or not. neither bothered to look at my notes even though the appointments were booked in advanced to do so, and both of them contradicted my neuro by saying i didnt have MS i had had 1) M.E., or 2) FND.

my neuro has always said from the get go i had MS it was just waiting to get dot the I’s and t’s, but he was unable to do so because of PROTOCOL.

but i stuck with him from 2006 to date.

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i remember the one with enhanced. the first film didnt really show activity but the second with agent showed a bright spot and the radiologist put it down to an ARC.

my neurologist actually overruled that and had it checked by someone else who agreed with him it was not an arc.

anyway this is a good article on MRI.

https://msfocusmagazine.org/Magazine/Magazine-Items/5-Things-to-Know-About-MRIs-and-MS

39

The trouble is that once MS is confirmed (with MRI, LP, VEP, whatever else!), often the neurologist will make a determination of RRMS as that’s more common and until it’s clear that there will be no remission or further inflammatory attacks, it’s safer than a diagnosis of PP from the outset. Or so they think. There is surely also a temptation to diagnose RR from the beginning because there are DMDs available for RR that are not available for PPMS (apart from Ocrevus for early PP). The problem with doing this is that some DMDs can have long lasting side effects. So to run the risk of DMDs when they can have no benefit is really unfair. There are many people who take DMDs for several years under the diagnosis of RR only to find later that the reason they’re not having relapses, but are becoming more disabled anyway is not the DMD, but the diagnosis.

Sue

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40

I completely agree, my MRIs have (to my knowledge - initially I knew exactly nothing about MS, diagnostic processes, MRI machines or indeed anything about pretty much anything!) been maximum T2s. I have trust in the scans.

That’s a really good point about scanning a slice and the lesion being underneath it! Never occurred to me before.

It sounds like you were lucky with neuro #1, shame you had to have the confused muddle of #s 2&3.

Sue