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Dissemination in Space and Time

Hi again everyone,

Can a 6.6mm lesion if not seen on a previous brain Mri scan be classed as a new lesion? Regardless of location can extra spots not seen on a previous Mri, be classed as new?

I was told i had a few extra spots than on my previous Mri, I had symptoms which were new. When putting together these two findings, why was lumbar puncture results relied upon more heavily than new spots and symptoms?

In reading the McDonald Criteria it states in one of it's guidelines, that any new lesion or lesions regardless of timing when compared to a baseline scan is evidence of Dissemination in Space, am i interpreting this correctly?

Dissemination in Time. Is this guideline for clinical attacks? I was admitted to hospital with double vision and loss of balance in 2014. I was attending a neurologist for several years, beginning with pins and needles way back in 2010, roughly around 2012, 2013, I presented with morning headaches which were on going for months. I also experienced around this time a numbness all over my body upon awakening on several occasions it lasted mere seconds, but i wonder was were these headaches and numbness a sign of something happening.

Still have double vision and balance problems, my double vision happens when the pen or finger test is carried out, i don't see double daily, but do have blurring vision and fullness in my head. I cannot hold my urine. I get small leaking especially when i awake, or if i need to go it's with urgency. I have bowel problems, i have extreme fatigue and weakness. My legs feel tight and they can get extremely painful. The weakness is awful, i can't apply myself to simple tasks, they exhaust me, it's like climbing a mountain to do things. I think my planning and organizational skills have slowed drastically. I am all day getting nowhere, my concentration is very poor. Definitely planning and organizational skills are very bad.

New symptoms and new spots. Lumbar puncture was advised to rule MS in or out. What is confusing me still two years on are my symptoms and my brain Mri 2014. A lesion measuring 6.6mm was noted as being the largest of 19 in both cerebral hemispheres, most numerous in the right frontal lobe. My second neurologist referred to T2 hyperintensities in the juxtacortical right frontal lobe. My latest two MRI's 2015, 2016, note small area's of white matter abnormality seen in the right frontal lobe. Both were compared by the same radiologist. He said there has been no change in size or number when comparing 2 016 to 2015. They are stable. No progression.

So I don't know, if i have two lesions or one lesion. 6.6mm and 3.5mm are two different measurements.

Can any of you shed light on this for me?

Thanks

Marian


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Avatar universal
Hi HVAC,

I did see an MS specialist in London, he said it didn't look like MS, but felt it very important that a neuroradiologisit look at all my MRI's. All MRI's were given to the neuroradiologisit except one. 2014. Months later i find this out. Send them back the disc for it to be compared.

The neuroradiologisits report is said, there has been no increase in the parachemya lesions, and essentially have been stable for years. No number given, no measurements given. No location given regarding Brain Mri 2014. All other MRI's from 2011 to 2016 subcortical is given. Non specific, incidental findings. Within limit for my age.

The 2014 Brain Mri, two neurologists didn't give it for comparison, and the last neuro said he didn't need to look at it. He said he only looks at present MRI's not past ones. Don't know what to make of them to be honest. One thing i do know is that my brain Mri 2014, notes changes that's for sure, but there seems to be an avoidance regarding it by all neurologists in some way or other.

I mean no wonder i am asking questions about it. They all bloody avoided it or any questions regarding it. It's more than just coincidental.

It's crazy the whole lot of it. Pillar to post i have had enough of with these guy's. All I want is clarification and all I'm getting is avoidance by all regarding this Mri. What am i supposed to make of it. Nothing? Easier said than done.

Something is going on and I'm going to get to it.

Either I'm crazy, or they are hiding something.

Marian




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Avatar universal
Hi again aspen2

I have asked the people at the hospital to also get my Mri 2010 out and for that and my 2014 Mri to be compared. That way it's fair to everyone. 2 MRI's at the same hospital, both ooking for Demyelination. To me personally it seems a big leap from 5-6 to 19 in four years. If this is normal then that's fine. If a lesion measuring 6.6 is normal that's also . If my symptoms are not connected to anything happening on my brain that's fine too. But it has to clarified better than it has been so far. That's all i am asking.

The specific location of the lesions. The increase in lesions. Are they in the juxtacortical region or not. What prompted him to specifically refer to MS in ruling it in or out on lumbar puncture results. What evidence did he have to specifically refer to MS? Why did feel lumbar puncture results were a given in if positive MS was ruled in, if negative ruled out. We all know plenty of people who have MS don't have a positive lumbar puncture. He excluded MS definitely, his own words written, relying on lumbar puncture results!

There was no mention of ruling in or out anything else. How did he narrow it down to MS?

I will keep you posted.

Marian



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Avatar universal
Hi aspen2,

Thanks for your thoughts.

Yes this neurologist said my symptoms were psychological. However he changed his mind on that when i started asking questions about location of the 6.6mm lesion and the McDonald Criteria. He didn't answer the questions, instead said he is finding it difficult to find a cause for my symptoms. How can a neurologist claim it psychological, and then say it's difficult to find a cause for my symptoms?

He backtracked. He didn't answer simple questions put to him. That is why i have now  asked the complaint office at the hospital to give him these same questions. Why hasn't he answered them before?

These are not difficult questions for a neurologist to answer. By avoiding answering them he really is making things look bad for himself, and I'm obviously suspicious if he doesn't want to answer them.

I believe i have two lesions. The one every Mri has shown measuring 3mm. Then in 2014, a measurement of 6.6mm is noted. If every other Mri saw 3mm, then of course i am going to question a new measurement. It's all very well to say he won't answer this question but really common sense tells that i have two lesions.

In 2015, my Mri said a measurement of 2-3mm, I am assuming this is the one all past MRI's are referring to. In January 2016, the measurement is up to 3.5mm. Both MRI's read by the same radiologist, both done at the same clinic.

2010 and 2014 done at the same hospital. 3mm is noted in 2010 right frontal lobe. 2014 notes a 6.6mm lesion. Every previous Mri has noted this 3mm lesion in the right frontal lobe. Either a lesion has been missed or not noted.

Juxtacortical has been mentioned. As far as I'm concerned this neurologist was paid well for years. What did i pay him for? I didn't pay him to not answer questions. It's not good enough. If he has nothing to hide, he will clarify thing's to me. By not answering simple questions, leaves me to doubt his handling of this.

Psychiatric help i don't need, when i do i will ask for it. This is about facts. Let him prove me wrong. I will gladly accept that i am wrong, but not until i first get satisfactory answers. I mean it's not about what suits him anymore, it's about him doing what he's paid to do. He should have no problem in answering the simple questions i put to him. If not the hospital will have to get involved. I won't accept unsatisfactory answers any longer.

Hugs
Marian.

By the way my vitamin B12 has dropped significantly since 2014, it was 204 in 2014, now it's at 104. It was just about in range normal range 187-880. 2014, at 204 so a bit questionable that also.





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Avatar universal
Sorry for bothering you again supermum_ms, i know you probably sleeping now. When you get this can you give me your thoughts. Hugs.

In my Mri report 2010 there is a number given 5-6 hyperintense non specific foci. In four years is an increase of to 19 significant? Is this a normal increase?

I have one radiologist saying these are more than expected for my age group, and another saying they are within normal limits for my age. I have a measurement of 3.5mm being stable and not progressing, but the 2014 was not included for comparison.

I have a 6.6mm lesion noted as being the largest of numerous. Yet if the radiologist at hospital compared my 2010 to 2014,  would there have been a more likely cause to my symptoms?

I don't understand it supermum_ms, because they had 2010 at the hospital. 5-6 was the amount given.

I'm going to wait for the neurologists reply. If he can say to me that everything is within limits, and the 6.6 mm lesion is of no relevance to my symptoms by saying where it is located specifically right or left hemisphere juxtacortical or not, whatever. But to sit smugly behind a desk and tell me i don't know my own mind and my symptoms are psychological is very wrong, and i will not be fooled by him or anyone else for that matter.

God only knows how long i will be waiting for him to get back to me. If he done his job right first time round, he could have avoided this mess. He is making thing's look bad for himself. No signs of activity was his last reply a couple of months back, I having asked specifically about the McDonald Criteria and the location of the 6.6mm lesion. No activity, then he says he is finding it difficult to find a cause for my symptoms which is why he is offering a second opinion. But the cause before i asked these questions was psychological.

If he is so confident that he is right he should be able to answer the questions simple as that and the sooner the better. By his not answering that's not acceptable.

Marian



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2 Comments
Re: counting lesions.  Sometimes not all lesions are counted. Some won't report the tiny ones; some will.  Your increase of lesions could be because they increased, BUT it also might be that first time around the tiniest ones were ignored.  You have had mris done at different locations, with different radiologists and read by different neurologists.  It's too late to backtrack and figure this out because you have absolutely no way of knowing how things were counted at this point.

The only way to do a proper comparison is to have one neurologist or neuro radiologist read them all.

I think at this point the only result from pushing a specialist will be getting ignored or burning bridges with the guy. He has already answered you.  I expect you won't get a reply (I will be very impressed with him if you do).  He already gave you his answer.

You are in limbo, potentially with something else entirely, and it's long and frustrating and entirely crazy-making ... but at this point, it's still a waiting game.  With what you shared, you are not diagnosable with ms.  It is difficult to come to peace with that, but right now, stick with the guy you are seeing, try to breathe, and do your best to treat symptoms and move on.

I would also strongly encourage you to get your pcp/gp to refer you to a psychiatrist. My gp did; at the time i was unimpressed however that appointment was a HUGE help -- MH issues ruled out and my psych was a huge advocate for me as limbo continued.

(((hugs)))

Are you seeing a MS Specialist. Many neurologists are not that good with diagnosing MS.
Alex
Avatar universal
Hi supermum_ms,

Thanks for explaining all of this to me. I'm sure I'm not fully understanding things. Just to let you know i have another brain Mri report from 2010. Done at the same hospital as Mri 2014 both as an inpatient. First time i met neuro no 1.  Was admitted at that time by my endocrine specialist.

I wrote a question following my 1st post about this. The Mri report speaks of subcortical hyperintense 3mm foci in the right frontal lobe also. No number given. My only concern is this 6.6mm lesion. Is it relevant or not, where is it located and if it's disappeared or is it still there.

Post traumatic can be ruled out, I didn't suffer a injury to my head. Ischemia, i think the lesion is a bit big for that.  What concerns me is if 3mm is around and stable for years, is the 6.6mm lesion a concern?

Taking everything into account, 3mm and 6.6mm are not the same, so this is why I want clarification. If it is true that i have a new lesion, and my symptoms together should be relevant. My GP has always said that my double vision concerns her. She doesn't believe it's caused by degenerative disc disease, or chronic fatigue syndrome. It's the one thing she finds odd.

No I haven't heard back from the Neurologist and I have asked that 2010 and 2014 MRI's be looked into. The questions were handed in on Friday, i don't know how long i will be waiting for a reply, and i don't know the protocol if the neurologist doesn't answer them. It's gone through the hospital now, and he is an employee of the hospital. The very least they could do is get me satisfactory answers.

This 6.6mm lesion and number of new T2 hyperintensities needs more clarification for me. I have debilitating symptoms and no end to them. I cannot rule MS out because the answers to my questions have not yet been answered. Saying to me you don't have MS by neuro no 1, neuro no 2 says low risk to develop it, neuro 3, said it didn't look like it, and neuro 4 said he wouldn't diagnose me with it.

Two of these neurologists failed to provide my  2014 Mri for comparison. The fourth neurologist didn't want to view it. I don't think unless something is on it that is relevant they would avoid this disc. This is not to say i am correct and they are all wrong. For all i know, it could be relevant. Of course it might not be MS. That lesion needs clarification on. I mean there are all sorts of things going through my head right now. Is it MS, is it a growth is it nothing. But if it were nothing why are they avoiding it?

I mean common sense would tell you, this Mri was avoided and never again was their mention of this lesion. What would any normal person make out of it? Having all the reports in front of them. Would people not question this or just let it go as meaning nothing.

Hugs
Marian

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987762 tn?1671273328
COMMUNITY LEADER
Marian you're hyper focusing on the specifics that pertain to when the lesions are consistent with demyelination, enhancing lesions are obvious but there are many other identifying factors i explained prior eg dawson's fingers, oval shape, perpendicular to the long axis of the lateral ventricles, 3mm+ etc

"Diagnosis of MS requires elimination of more likely diagnoses and demonstration of dissemination of lesions in space and time"  

You have multiple diagnosed medical conditions that combined more likely explain your symptoms, your clinical signs of neuro abnormality more likely explained by your abnormal spinal MRI and your multiple brain MRI's haven't the evidence to meet the Mcdonald criteria of time and space.

"Dissemination in space, demonstrated by >1T2 lesion in at least two MS typical CNS regions (periventricular, juxtacortical, infratorial, spinal cord);"  

You don't meet the Mcdonald criteria because you've had multiple MRI's since 2011 and the only location been the frontal lobes (both cerebral hemispheres), and they have always been classed as nonspecific lesions because there hasn't been anything to identify them as demyelingating.

The only MRI (2014) that specifies a lesion number, which does add to 19, makes a point of stating they are 'tiny foci' with only one lesion identified as being larger than tiny ie 6.6mm.

Tiny Lesions are typically not counted, because they are typically ischemic micro vascular bleeds and being something like 500 times more common than MS lesions are. Your later 2016 brain MRI report, is more typical of how tiny lesions in the frontal lobes are mentioned in the report "Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter."    

"Dissemination in time, demonstrated by Simultaneous asymptomatic contrast-enhancing and non-enhancing lesions at any time ; OR A new T2 and/or contrast-enhancing lesions(s) on follow-up MRI, irrespective of its timing;"

You haven't fulfilled 'DIS' from 2011-2016 and you won't of fulfilled 'DIT' 2015-2016 if the 2016 MRI when compared to 2015 (must be no less than 30days before) and your MRI's are "unchanged in size and number since February 2015. No larger white matter abnormality." in that time frame.

From what i understood of your neuro-radiologists review of your brain MRI's going back further, was that your MRI's have consistently indicated a few non specific bilateral frontal lobe lesions, 2014 MRI mentioning the 1 right frontal lobe lesion of 6.6mm with subsequent MRI's not finding any right frontal lobe lesions larger than 3.5mm.  

You really need to keep in mind that frontal lobe lesions are honestly not associated with your extensive list of different symptoms but you do have diagnosed multiple medical conditions that are associated and together could account for most if not all.

Whilst i have no doubt that you have a lot of symptom progression since this started, your brain MRI's from 2011-2016 are more red flags pointing away from an MS causation......5 years is a long period of time for MS to a) not be more evident on any related tests b) still be in only one common frontal lobe location and no other, c) cause symptom progression with out corroborating progression eg MRI, clinical, other test  

You said "roughly around 2012, 2013, I presented with morning headaches which were on going for months. I also experienced around this time a numbness all over my body upon awakening on several occasions it lasted mere seconds".....'all over' your body, numbness, tingling etc only lasted 'seconds', specific to a time or activity eg waking up, sitting etc  is not something that is suggestive or consistent with a neurological condition like MS, maybe either your dx migraines or structural spinal abnormalities would be more likely explanations.

Hope that helps.......JJ

ps: MS Mcdonald quotes are from here...
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-TipSheet_-2010-Revisions-to-the-McDonald-Criteria-for-the-Diagnosis-of-MS.pdf

Have you heard back from neuro 1 yet, who you
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