Aa
The McDonald Criteria
Hi everyone, it's been awhile since i posted. Unfortunately i am as confused as ever regarding my symptoms and why i have them. I would just like a little help with interpreting the 2010 McDonald Criteria. I have lesions in juxtacortical region of my brain. In 2014, a 6.6mm lesion was noted as being the largest of numerous in the right frontal lobe. May i add here that at that time, i didn't know anything about juxtacortical as being the location. It was when i went for a second opinion that the neuro wrote juxtacortical right frontal lobe.
I have since had a brain Mri, which notes white matter abnormality measuring up to 3.5mm in diameter, with no other larger white abnormality seen. Can one lesion grow over the other? I'm confused about the McDonald Criteria, because it says two T2 lesions in the juxtacortical region and clinical symptoms is all that is needed for a diagnosis of MS. I believe i have two lesions and clinical symptoms, but the neuros I've seen don't think it's MS.
The latest diagnosis is chronic fatigue type syndrome / Fibromyalgia. I want to discuss the McDonald Criteria and the location of my lesions, but none of the neuros I've seen are helpful in doing this. Everyone of the neuros I have seen, have all i believe tried to avoid my brain Mri 2014. No one wants to discuss it or the McDonald Criteria with me.
Help!! I feel as though there is evidence of MS on that Mri, but when i try to discuss it, they don't want to discuss it. Why would this be?
I'm going back to 2014, to try and get answers regarding this Mri because i feel i need to in order to get answers which i believe are on that Mri. I am making a complaint to the hospital because I feel there is evidence of MS on that Mri.
Any thoughts i would gladly take for you.
Marian 13
I have since had a brain Mri, which notes white matter abnormality measuring up to 3.5mm in diameter, with no other larger white abnormality seen. Can one lesion grow over the other? I'm confused about the McDonald Criteria, because it says two T2 lesions in the juxtacortical region and clinical symptoms is all that is needed for a diagnosis of MS. I believe i have two lesions and clinical symptoms, but the neuros I've seen don't think it's MS.
The latest diagnosis is chronic fatigue type syndrome / Fibromyalgia. I want to discuss the McDonald Criteria and the location of my lesions, but none of the neuros I've seen are helpful in doing this. Everyone of the neuros I have seen, have all i believe tried to avoid my brain Mri 2014. No one wants to discuss it or the McDonald Criteria with me.
Help!! I feel as though there is evidence of MS on that Mri, but when i try to discuss it, they don't want to discuss it. Why would this be?
I'm going back to 2014, to try and get answers regarding this Mri because i feel i need to in order to get answers which i believe are on that Mri. I am making a complaint to the hospital because I feel there is evidence of MS on that Mri.
Any thoughts i would gladly take for you.
Marian 13
Best Answer
Hi supermum_ms
I have sent my questions to the first neurologist. I don't know if he will answer them. There is too much dismissal but many unanswered questions regarding my symptoms and in particular my brain 2014. He is the one who's care i was under when he ordered this Mri.
My interpretation of what he said when he was referring to lumbar puncture to rule in or out MS, that if it were positive the diagnosis would have been MS. But what prompted him to say what he said must have something to do with what's on my brain Mri 2014.
He compared it to my previous Mri and told me i had a few extra spots. One of my questions to him is, is there evidence of Dissemination in Space on this comparison? Where s the location of the 6.6mm lesion? And was this lesion on my previous Mri.
I asked about Dissemination in Time. Are my clinical symptoms regarding this relevant?
I have been a patient of his for several years, so clinical symptoms i have presented with on numerous occasions, 2014 New symptoms double vision loss of balance, From then till now i have on going double vision and balance problems and new symptoms like severe fatigue, weakness, bowel and urinary issues, drunkenness feeling all of the time, it's like my body cannot apply itself correctly, so I'm slow, awkward and clumsy.
I believe this 6.6mm lesion has a lot to do with why i am so unwell. My symptoms are without doubt debilitating my life, so this lesion i think needs to be discussed further, and it can't just disappear without leaving evidence of scarring or something.
supermum_ms one lesion can cause more debilitating symptoms than say 50, if one is in a location that is responsible for movement, vision, balance, and all my other symptoms. It's location i feel may unlock this utter confusion, and being thrown from pillar to post. It's not good enough to dismiss me without first clarifying these questions i have. All the radiologists reports are just as confusing, but something is happening on my Brain or has happened.
Any thoughts supermum_ms?
Hugs
Marian
I have sent my questions to the first neurologist. I don't know if he will answer them. There is too much dismissal but many unanswered questions regarding my symptoms and in particular my brain 2014. He is the one who's care i was under when he ordered this Mri.
My interpretation of what he said when he was referring to lumbar puncture to rule in or out MS, that if it were positive the diagnosis would have been MS. But what prompted him to say what he said must have something to do with what's on my brain Mri 2014.
He compared it to my previous Mri and told me i had a few extra spots. One of my questions to him is, is there evidence of Dissemination in Space on this comparison? Where s the location of the 6.6mm lesion? And was this lesion on my previous Mri.
I asked about Dissemination in Time. Are my clinical symptoms regarding this relevant?
I have been a patient of his for several years, so clinical symptoms i have presented with on numerous occasions, 2014 New symptoms double vision loss of balance, From then till now i have on going double vision and balance problems and new symptoms like severe fatigue, weakness, bowel and urinary issues, drunkenness feeling all of the time, it's like my body cannot apply itself correctly, so I'm slow, awkward and clumsy.
I believe this 6.6mm lesion has a lot to do with why i am so unwell. My symptoms are without doubt debilitating my life, so this lesion i think needs to be discussed further, and it can't just disappear without leaving evidence of scarring or something.
supermum_ms one lesion can cause more debilitating symptoms than say 50, if one is in a location that is responsible for movement, vision, balance, and all my other symptoms. It's location i feel may unlock this utter confusion, and being thrown from pillar to post. It's not good enough to dismiss me without first clarifying these questions i have. All the radiologists reports are just as confusing, but something is happening on my Brain or has happened.
Any thoughts supermum_ms?
Hugs
Marian
2 Comments
"one lesion can cause more debilitating symptoms than say 50, if one is in a location that is responsible for movement, vision, balance, and all my other symptoms." Theoretically that's true but it's completely dependent on location eg cerebellum, brainstem, spinal cord etc and your focused on that one lesion being in the right frontal lobe and that's the largest lobe in the brain, that part of the brain plays a key role in higher mental functions eg motivation, planning, behaviour, speech production etc.
"what prompted him to say what he said must have something to do with what's on my brain Mri 2014. "
Yes that is likely possible but It's probably not the way your thinking though, nowadays LP's are often run when additional suggestive/consistent diagnostic evidence is needed, positive LP results still add weight either towards or away from a diagnosis of MS. LP's are not diagnostically necessary to meet the MS Mcdonald criteria, but if the LP is positive for Obands then that would limit causation, often putting MS at the top of the patients causation list when added to everything else.
"it can't just disappear without leaving evidence of scarring or something" sorry but lesions can disappear, your actually assuming it's completely disappeared because that exact size is not mentioned again, how do you know it's not still visible and just smaller?
"Also the corpus callosum on my brain Mri 2014, noted sub punctuate lesion measuring 2mm. Don't know if that is relevant to anything."
Your MRI report stated "There is a tiny punctate sub 2mm lesion identified in the posterior aspect of the corpus callosum." There are two parts to the corpus callosum the Anterior (front) and the Posterior (back), the corpus callosum connects the left and right cerebral hemispheres. Punctate lesion meaning pinpoint sized lesion, which may not actually be a lesion but at least the radiologist saw it and is pointing out even the tiny sized lesion.
Again its very late over here, so that's all i can get my brain to come up with now.
Hope it helps........JJ
"what prompted him to say what he said must have something to do with what's on my brain Mri 2014. "
Yes that is likely possible but It's probably not the way your thinking though, nowadays LP's are often run when additional suggestive/consistent diagnostic evidence is needed, positive LP results still add weight either towards or away from a diagnosis of MS. LP's are not diagnostically necessary to meet the MS Mcdonald criteria, but if the LP is positive for Obands then that would limit causation, often putting MS at the top of the patients causation list when added to everything else.
"it can't just disappear without leaving evidence of scarring or something" sorry but lesions can disappear, your actually assuming it's completely disappeared because that exact size is not mentioned again, how do you know it's not still visible and just smaller?
"Also the corpus callosum on my brain Mri 2014, noted sub punctuate lesion measuring 2mm. Don't know if that is relevant to anything."
Your MRI report stated "There is a tiny punctate sub 2mm lesion identified in the posterior aspect of the corpus callosum." There are two parts to the corpus callosum the Anterior (front) and the Posterior (back), the corpus callosum connects the left and right cerebral hemispheres. Punctate lesion meaning pinpoint sized lesion, which may not actually be a lesion but at least the radiologist saw it and is pointing out even the tiny sized lesion.
Again its very late over here, so that's all i can get my brain to come up with now.
Hope it helps........JJ
Thanks supermum_ms, i know i am a bit too much, in i analyse everything!! But if someone refers to something specifically as in my case ruling in or out MS on lumbar puncture results, then i would like to know what prompted him to specifically refer to MS.
I am hoping he will answer my questions. It would clear up a lot of things for me. There's been a lot of dismissal and no clarification on the issues i have.
The questions i asked him are not difficult. They are specifically regarding MS. He specifically raised MS. He specifically ruled it out on lumbar puncture. Big question for me is did he also rule it out on my brain and my clinical symptoms.
I am very unwell, and it's not acceptable that satisfactory answers have not been given. It could be another totally different condition i have, but MS has not for me been ruled out, not based on lumbar puncture results alone.
I mean it's ludicrous for him to specifically refer to it following my brain Mri, and then exclude it definitely based on lumbar puncture results.
I hope he takes me seriously now and put this to bed once and for all. He caused all this confusion for me. He shouldn't have a problem with this if he's so confident that i don't have MS.
I'm sorry supermum_ms, but it's his job to help his patient not ignore or upset them. This will be all over soon i hope. I just want my concerns cleared up so i can get on with my life.
Really sorry i hope you understand my frustration and confusion. Thanks for listening and you have been very kind and helpful :) I won't post again until I hear back from the hospital. I won't expect too much. I've asked the questions just wait and see now :)
Take Care and thanks for your patience.
Hugs
Marian.
I am hoping he will answer my questions. It would clear up a lot of things for me. There's been a lot of dismissal and no clarification on the issues i have.
The questions i asked him are not difficult. They are specifically regarding MS. He specifically raised MS. He specifically ruled it out on lumbar puncture. Big question for me is did he also rule it out on my brain and my clinical symptoms.
I am very unwell, and it's not acceptable that satisfactory answers have not been given. It could be another totally different condition i have, but MS has not for me been ruled out, not based on lumbar puncture results alone.
I mean it's ludicrous for him to specifically refer to it following my brain Mri, and then exclude it definitely based on lumbar puncture results.
I hope he takes me seriously now and put this to bed once and for all. He caused all this confusion for me. He shouldn't have a problem with this if he's so confident that i don't have MS.
I'm sorry supermum_ms, but it's his job to help his patient not ignore or upset them. This will be all over soon i hope. I just want my concerns cleared up so i can get on with my life.
Really sorry i hope you understand my frustration and confusion. Thanks for listening and you have been very kind and helpful :) I won't post again until I hear back from the hospital. I won't expect too much. I've asked the questions just wait and see now :)
Take Care and thanks for your patience.
Hugs
Marian.
Hi again supermum_ms,
I didn't mention my symptoms . Balance falling to me side, severe fatigue, double vision, constant drowsiness, clumsiness, can't properly do things. Urinary urgency, extreme heavy legs, just dragging them. My balance is like someone drunk,. I feel constant fullness in my head . Memory and concentration are also affected. I have no interest in anything, I'm kind of out of it if you understand, like I'm not fully awake, tinnitus. I am awkward and very out of kilter.
My vitamin B12 was normal in 2014, now it's not. The neurologist last week said my symptoms were not related to that deficiency. When i first went to my first neurologist in 2014 it was with my vision and balance issues, He admitted me to hospital as you know. But i have worsened a lot since then. Getting more symptoms and more fatigued.
I don't know what's wrong which isn't helping.
Hugs
Marian
I didn't mention my symptoms . Balance falling to me side, severe fatigue, double vision, constant drowsiness, clumsiness, can't properly do things. Urinary urgency, extreme heavy legs, just dragging them. My balance is like someone drunk,. I feel constant fullness in my head . Memory and concentration are also affected. I have no interest in anything, I'm kind of out of it if you understand, like I'm not fully awake, tinnitus. I am awkward and very out of kilter.
My vitamin B12 was normal in 2014, now it's not. The neurologist last week said my symptoms were not related to that deficiency. When i first went to my first neurologist in 2014 it was with my vision and balance issues, He admitted me to hospital as you know. But i have worsened a lot since then. Getting more symptoms and more fatigued.
I don't know what's wrong which isn't helping.
Hugs
Marian
Hi supermum_ms,
This is the neuroradiologisits report from London regarding my brain Mri 2014, and comparison to all my previous MRI's.
Unenhanced Mri Brain 29/09/2014.
Clinical History: 6 years paraesthesia. September 2014 decreased cognition and balance. Few increased T2 lesion right frontal lobe. ? More. ? Vasculitis. ?Inflammation.
Findings:
Comparison made with the previously reviews Mri Brain studies dating back to September 2011 and from February 2015. The study under review shows no additional Parenchymal lesions or other adverse features when compared with either the penultimate or subsequent study.
As previously described, there are a few tiny predominantly subcortical T2 hyperintense foci in both frontal lobes, which although non specific, are within normal limits for age, a common incidental finding and essential stable of several years. The intracranial appearances are otherwise unremarkable on all studies.
This neuroradiologisit is not specifically an MS neuroradiologisit, but a head and neck neuroradiologisit. But she still found nothing relating to anything really.
She also compared my January 2016 Mri.
Comparison made with the previously reviews Mri Brain studies dating back to September 2011. The only interval change is some increase in size of nasopharyngeal mucous retention cysts that are of no clinical significance. The few unconcerning previously described tiny predominantly subcortical T2 hyperintense foci in both frontal lobes are unchanged.
That's it. But where is the 6.6mm lesion that was noted by the Radiologist while i was a patient in hospital. The neuroradiologisit in London makes no reference to any 6.6mm lesion or indeed to the 3.5mm lesion noted on my brain Mri 2016.
Also the corpus callosum on my brain Mri 2014, noted sub punctuate lesion measuring 2mm. Don't know if that is relevant to anything. But it's like two lesions are noted here in Ireland giving measurements, but in London no measurements. Location is not really fully clarified in either the reports here or from London. The only mention of juxtacortical was from the second neurologist.
I went to see my sinus surgeon yesterday. He is an ENT surgeon. He removed my thyroid a couple of years back, and also endoscopic sinus surgery. We had a long chat about my symptoms and my MRI's. He thinks 19 lesions would be more than expected for someone aged 46. When i told him the largest being 6.6 he kind of thought that to be large. I picked up that maybe that lesion he thought could well be causing my symptoms. He didn't say this but this what i picked up. He said some neurologists would have a good idea what you have, but for insurance purposes may not give a diagnosis, because if they were wrong it would fall on them. I don't know supermum_ms but something just isn't sitting right with me.
Marian
This is the neuroradiologisits report from London regarding my brain Mri 2014, and comparison to all my previous MRI's.
Unenhanced Mri Brain 29/09/2014.
Clinical History: 6 years paraesthesia. September 2014 decreased cognition and balance. Few increased T2 lesion right frontal lobe. ? More. ? Vasculitis. ?Inflammation.
Findings:
Comparison made with the previously reviews Mri Brain studies dating back to September 2011 and from February 2015. The study under review shows no additional Parenchymal lesions or other adverse features when compared with either the penultimate or subsequent study.
As previously described, there are a few tiny predominantly subcortical T2 hyperintense foci in both frontal lobes, which although non specific, are within normal limits for age, a common incidental finding and essential stable of several years. The intracranial appearances are otherwise unremarkable on all studies.
This neuroradiologisit is not specifically an MS neuroradiologisit, but a head and neck neuroradiologisit. But she still found nothing relating to anything really.
She also compared my January 2016 Mri.
Comparison made with the previously reviews Mri Brain studies dating back to September 2011. The only interval change is some increase in size of nasopharyngeal mucous retention cysts that are of no clinical significance. The few unconcerning previously described tiny predominantly subcortical T2 hyperintense foci in both frontal lobes are unchanged.
That's it. But where is the 6.6mm lesion that was noted by the Radiologist while i was a patient in hospital. The neuroradiologisit in London makes no reference to any 6.6mm lesion or indeed to the 3.5mm lesion noted on my brain Mri 2016.
Also the corpus callosum on my brain Mri 2014, noted sub punctuate lesion measuring 2mm. Don't know if that is relevant to anything. But it's like two lesions are noted here in Ireland giving measurements, but in London no measurements. Location is not really fully clarified in either the reports here or from London. The only mention of juxtacortical was from the second neurologist.
I went to see my sinus surgeon yesterday. He is an ENT surgeon. He removed my thyroid a couple of years back, and also endoscopic sinus surgery. We had a long chat about my symptoms and my MRI's. He thinks 19 lesions would be more than expected for someone aged 46. When i told him the largest being 6.6 he kind of thought that to be large. I picked up that maybe that lesion he thought could well be causing my symptoms. He didn't say this but this what i picked up. He said some neurologists would have a good idea what you have, but for insurance purposes may not give a diagnosis, because if they were wrong it would fall on them. I don't know supermum_ms but something just isn't sitting right with me.
Marian
COMMUNITY LEADER
Thoughts for you to consider:
If you've had to separately pay good money to get your MRI's since 2011 reviewed by an expert, and the report is lacking detailed information, it might be more worth while asking the neuro-radiologist for any specific lesion information, you paid for an additional service and if you didn't get anything informative it might end up being more beneficial to you to ask him/her for more information.
It's worth contacting the professor (neuro 2) for help and guidance on what you should do.......considering a lot of the information your going by comes from him, and this seems to be the only neurologist who you trusted and he was supportive of you and sensitive to your travel issues and preferred you see a neuro closer to home, which is unfortunately where every following neurologist experience went pair shaped.
He was not convinced you had ms but you also suspect he knew something about what was going on, and he did want to keep an eye on you which is a common wait and see approach when the cause of brain lesions are not clear, periodic MRI's can be anything from 3mths, 6mths or yearly.
He was who first mentioned (2015) juxtacortical and specified "juxtacortical, right frontal lobe lesions", btw the MRI report prior (2014) stated you actually had 'bilateral' frontal lobe lesions "tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm."
Whilst that does add up to 19 in total, lesion size noted as being tiny, micro or very small, usually refer to brain lesions 3mm or less in size, and they are often dismissed as ischemic micro vascular lesions and when most are tiny reports often don't specify an individual number but state few, multi, numerous, popcorn, scattered, small number etc. and they point out only those lesions larger than.....'theoretically' the 6.6mm could be the only right frontal lobe (cerebral) lesion being acknowledged by the neuro you saw back in 2014.
The professor ran the spinal MRI that did find you had structural evidence of other neurologic disease "C3-4: Mild central disc protrusion slightly indenting the cord just right of the midline. C4-5: Mild broad-based central and right paracentral disc bulge slightly indenting the cord. C5-6: Large left paracentral disc protrusion causing cord compression and narrowing of the left lateral recess and foramen. C6-7: Focal right paracentral disc protrusion compressing the cord and narrowing the right exit foramen and lateral recess.
Summary: Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7. "
He organised a surgery consult after those results came in, but for some reason stopped you from having surgery and you haven't mentioned any other treatment plan offered to help you with your symptoms, he just seems more likely someone you would get a respectful and straight answer from where as the first neuro didn't even look for an alternative neurological explanation and still decided it was functional grrrrrr
**i think you once mentioned you've not had relapses and only progression of issues, i don't actually think you've mentioned the types of symptoms your dealing with and symptom type, pattern etc can point towards or away from neurological conditions like MS too.
Follow your gut but please consider trying to get more current answers from someone you respect and or paid specifically for too :D
Hope that helps........JJ
If you've had to separately pay good money to get your MRI's since 2011 reviewed by an expert, and the report is lacking detailed information, it might be more worth while asking the neuro-radiologist for any specific lesion information, you paid for an additional service and if you didn't get anything informative it might end up being more beneficial to you to ask him/her for more information.
It's worth contacting the professor (neuro 2) for help and guidance on what you should do.......considering a lot of the information your going by comes from him, and this seems to be the only neurologist who you trusted and he was supportive of you and sensitive to your travel issues and preferred you see a neuro closer to home, which is unfortunately where every following neurologist experience went pair shaped.
He was not convinced you had ms but you also suspect he knew something about what was going on, and he did want to keep an eye on you which is a common wait and see approach when the cause of brain lesions are not clear, periodic MRI's can be anything from 3mths, 6mths or yearly.
He was who first mentioned (2015) juxtacortical and specified "juxtacortical, right frontal lobe lesions", btw the MRI report prior (2014) stated you actually had 'bilateral' frontal lobe lesions "tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm."
Whilst that does add up to 19 in total, lesion size noted as being tiny, micro or very small, usually refer to brain lesions 3mm or less in size, and they are often dismissed as ischemic micro vascular lesions and when most are tiny reports often don't specify an individual number but state few, multi, numerous, popcorn, scattered, small number etc. and they point out only those lesions larger than.....'theoretically' the 6.6mm could be the only right frontal lobe (cerebral) lesion being acknowledged by the neuro you saw back in 2014.
The professor ran the spinal MRI that did find you had structural evidence of other neurologic disease "C3-4: Mild central disc protrusion slightly indenting the cord just right of the midline. C4-5: Mild broad-based central and right paracentral disc bulge slightly indenting the cord. C5-6: Large left paracentral disc protrusion causing cord compression and narrowing of the left lateral recess and foramen. C6-7: Focal right paracentral disc protrusion compressing the cord and narrowing the right exit foramen and lateral recess.
Summary: Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7. "
He organised a surgery consult after those results came in, but for some reason stopped you from having surgery and you haven't mentioned any other treatment plan offered to help you with your symptoms, he just seems more likely someone you would get a respectful and straight answer from where as the first neuro didn't even look for an alternative neurological explanation and still decided it was functional grrrrrr
**i think you once mentioned you've not had relapses and only progression of issues, i don't actually think you've mentioned the types of symptoms your dealing with and symptom type, pattern etc can point towards or away from neurological conditions like MS too.
Follow your gut but please consider trying to get more current answers from someone you respect and or paid specifically for too :D
Hope that helps........JJ
Hi aspen2,
Sorry forgot to mention in my earlier post that my heart was checked a couple of years back and all was good then. No hole in the heart or any other abnormalities. Blood flow and valves were checked. Actually the second neurologist specializes in Stroke, i suppose if the lesions were the cause of bleeds, he would have some idea specializing in Stroke. I will mention this to my GP what you said, no harm in asking if any more cardiac tests would be helpful.
Thanks again for your thoughts and advice. It helps a lot :)
Marian
Sorry forgot to mention in my earlier post that my heart was checked a couple of years back and all was good then. No hole in the heart or any other abnormalities. Blood flow and valves were checked. Actually the second neurologist specializes in Stroke, i suppose if the lesions were the cause of bleeds, he would have some idea specializing in Stroke. I will mention this to my GP what you said, no harm in asking if any more cardiac tests would be helpful.
Thanks again for your thoughts and advice. It helps a lot :)
Marian
Hi supermum_ms
You're very good to go through all you have and give me your thoughts. I understand where you are coming from. The first neurologist wrote no enhancing lesions in his letter, but he didn't give contrast. He didn't carry out any spinal MRI's. The brain Mri done was in one of the top private hospitals in my city, when i was then an inpatient there under this neurologist.
There are differences in scanners i know, but this Mri noted 19 lesions, my February 2015, and January 2016 were carried out at another clinic. Those two MRI's speak of a small area of white matter abnormality measuring up to 3mm in February 2015, and 3.5mm in January. I believe the Mri 2014 has the most information on it, which is why i want to talk to the first neurologist.
The second neurologist i should add here supermum_ms, referred specifically to this Mri when he wrote T2 juxtacortical high signal foci. He wrote this in his letter. He looked at this Mri and that was his comment regarding it. Yes he sent me to a spinal surgeon, but i must clarify here that he cancelled surgery also. Now all i can say here is that i agreed to have surgery knowing that all my symptoms would not be addressed by this surgery and that there was a chance also that my symptoms could worsen. There were no guarantees.
Having met the surgeon, and us agreeing on surgery as being an option for me it was planned to go ahead, the surgeon knew i was aware of the pro's and con's. I return to the Neurologist, and he starts telling me that the recovery from this type of surgery is long and because i am unwell as it is along with it not being a fix for all my symptoms he was unsure about it. He said he was going to call a multidisciplinary meeting between himself, the radiologist and the surgeon and he would get back to me.
He didn't get back to me, but the surgeon personally rang me and said that the professor called him and said not to proceed. He said my neurologist was a highly intelligent man and that it was rare he would tell him not to proceed. He asked me has the professor told you what's wrong with you? I said the professor did not specifically tell me what was wrong with me, except about a low risk to develop MS, and to be both clinically with Mri reviewed on at least an annual basis. This was in March 2015 when all this was said, professor asked that my next Mri be early January 2016.
I have tried to return to him, but the professor didn't want me travelling all the way to him it's a six hour bus ride going and coming back home. He preferred that i be under the care of a neurologist closer to home. He is a caring and lovely man.
Too be honest i think he knew something, but i don't know obviously what that is. Reading between the lines i believe he knows something. I have every letter and every test result from all the neurologists i have seen.
I don't know if this MS, or it's going to develop into MS, or something completely different. I don't know should i ask questions, but at the same time i want to ask them. I understand the experts don't like to be asked questions, but they can't expect either not to be asked if a patient has serious unanswered questions. The 2014 Brain Mri i have questions relating to it's findings and my symptoms. The first neurologist asked for this Mri, so it's him that the questions should put to.
Of course it's not nice to be questioned in your field of expertise, but if i don't fight my corner on this, who will? A patient has a right to ask questions regarding their health. They should be happy to answer questions. If they can take my money and not getting satisfactory answers, what am i paying them for.
Yes i am frustrated and angry, but I'm also going to go with my gut feeling on this, I am going to send in the written questions, and we will see how he responds. It's not about him and what suits him or upsets him. He was paid, so the least he can do is acknowledge my questions.
Thanks supermum_ms for your thoughts and i do appreciate them. It's bed time here now:) Talk soon.
Hugs
Marian
You're very good to go through all you have and give me your thoughts. I understand where you are coming from. The first neurologist wrote no enhancing lesions in his letter, but he didn't give contrast. He didn't carry out any spinal MRI's. The brain Mri done was in one of the top private hospitals in my city, when i was then an inpatient there under this neurologist.
There are differences in scanners i know, but this Mri noted 19 lesions, my February 2015, and January 2016 were carried out at another clinic. Those two MRI's speak of a small area of white matter abnormality measuring up to 3mm in February 2015, and 3.5mm in January. I believe the Mri 2014 has the most information on it, which is why i want to talk to the first neurologist.
The second neurologist i should add here supermum_ms, referred specifically to this Mri when he wrote T2 juxtacortical high signal foci. He wrote this in his letter. He looked at this Mri and that was his comment regarding it. Yes he sent me to a spinal surgeon, but i must clarify here that he cancelled surgery also. Now all i can say here is that i agreed to have surgery knowing that all my symptoms would not be addressed by this surgery and that there was a chance also that my symptoms could worsen. There were no guarantees.
Having met the surgeon, and us agreeing on surgery as being an option for me it was planned to go ahead, the surgeon knew i was aware of the pro's and con's. I return to the Neurologist, and he starts telling me that the recovery from this type of surgery is long and because i am unwell as it is along with it not being a fix for all my symptoms he was unsure about it. He said he was going to call a multidisciplinary meeting between himself, the radiologist and the surgeon and he would get back to me.
He didn't get back to me, but the surgeon personally rang me and said that the professor called him and said not to proceed. He said my neurologist was a highly intelligent man and that it was rare he would tell him not to proceed. He asked me has the professor told you what's wrong with you? I said the professor did not specifically tell me what was wrong with me, except about a low risk to develop MS, and to be both clinically with Mri reviewed on at least an annual basis. This was in March 2015 when all this was said, professor asked that my next Mri be early January 2016.
I have tried to return to him, but the professor didn't want me travelling all the way to him it's a six hour bus ride going and coming back home. He preferred that i be under the care of a neurologist closer to home. He is a caring and lovely man.
Too be honest i think he knew something, but i don't know obviously what that is. Reading between the lines i believe he knows something. I have every letter and every test result from all the neurologists i have seen.
I don't know if this MS, or it's going to develop into MS, or something completely different. I don't know should i ask questions, but at the same time i want to ask them. I understand the experts don't like to be asked questions, but they can't expect either not to be asked if a patient has serious unanswered questions. The 2014 Brain Mri i have questions relating to it's findings and my symptoms. The first neurologist asked for this Mri, so it's him that the questions should put to.
Of course it's not nice to be questioned in your field of expertise, but if i don't fight my corner on this, who will? A patient has a right to ask questions regarding their health. They should be happy to answer questions. If they can take my money and not getting satisfactory answers, what am i paying them for.
Yes i am frustrated and angry, but I'm also going to go with my gut feeling on this, I am going to send in the written questions, and we will see how he responds. It's not about him and what suits him or upsets him. He was paid, so the least he can do is acknowledge my questions.
Thanks supermum_ms for your thoughts and i do appreciate them. It's bed time here now:) Talk soon.
Hugs
Marian
Hi aspen2,
Thank you for highlighting this. It is very interesting. Maybe each of the neurologists are right in what they say. Maybe juxtacortical is or isn't concerning. I'm not sure whether I'm barking up the wrong tree or not. Maybe it's something else entirely and not MS.
I think i will just try and get clarification on a couple of thing's. My only real concern is if any lesion or lesions are connected to my symptoms. I have debilitating symptoms and lesions that need clarification for me.
Thanks for your thoughts, hopefully some of my questions will be answered.
Marian
Thank you for highlighting this. It is very interesting. Maybe each of the neurologists are right in what they say. Maybe juxtacortical is or isn't concerning. I'm not sure whether I'm barking up the wrong tree or not. Maybe it's something else entirely and not MS.
I think i will just try and get clarification on a couple of thing's. My only real concern is if any lesion or lesions are connected to my symptoms. I have debilitating symptoms and lesions that need clarification for me.
Thanks for your thoughts, hopefully some of my questions will be answered.
Marian
COMMUNITY LEADER
I'm sorry for what you've been through, I really am but i don't know what or if any good will come from asking the first neuro those questions, there aren't many doctors of any specialty that respond favorably to a patient questioning their experience and or opinion. After all this time no doctor will recall exactly what was said or in what context, he's likely going to have to look through your medical file if he's willing to even respond to your questions.....if his conclusion was that you had a psychological condition and your symptoms were functional, he'll have written all his reasoning in his notes, i'm just a bit concerned your not going to get the answers your looking for and you'll end up even more frustrated, or upset.
I've actually gotten a tad confused on why your questions are for the first neuro and not the second, the first's opinion was that it was psychological but the second neuro didn't as he's the one that first identified jutacortical lesions and the abnormal spinal related clinical signs (bilateral upper and lower hyperreflexia, positive Hoffman's bilaterally, positive Rhombergs.) and that you had "Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7." btw those specific clinical signs are actually associated with structural spinal conditions that cause cord compression.
I don't know much of anything when it comes to interpreting blood test results, off the top of my head a raised globulin has something to do with infection or inflammation, probably other things too but i'm sorry i don't know what they'd be...
I honestly don't think you would get many neurologists diagnosing MS with only having lesions in one of the Mcdonald locations, those clinical signs wouldn't count in regards to MS because they can be accounted for with the multi lever DDD and cord compression.
I can't explain why 3 neurologists with at least one of them being an MS specializing neuro, would think anyone was 'highly suggestive' of MS IF after multiple MRI's in 2+ years there still wasn't the typical additional MS related evidence to finally put MS at the top of the patients causes list.....putting their patient on 'wait and see' monitoring if MS was still a potential diagnosis and or treating the patient if there was sufficient diagnostic evidence of an unidentified-identified neurological condition, would of made sense so there has to be something that would make the lesions less likely to be demyelinating lesions.
Basically demyelinating lesions are more obvious when they light up with contrast but there are other specifics still looked for when there hasn't been contrast run eg location, size, shape, dawsons fingers, distribution - symmetrical etc contrast will only show lesions that are currently under attack but those same lesions are suppose to still be visible without contrast, without contrast though they basically can't say if they the blood brain barrier has been breached or not.
In some countries, government funded hospitals don't necessarily run contrast even when the patient is being investigated for MS, some will run contrast MRI's only after the first non contrast MRI's have shown lesions in locations consistent or more suggestive of MS there's probably many other reasons why but it's late over my side of the world and i've got to finish this so i can go to bed :D
I'll check if i've covered all your questions, if i see any thing i've missed i'll try to cover those tomorrow
Hope that helps.........JJ
I've actually gotten a tad confused on why your questions are for the first neuro and not the second, the first's opinion was that it was psychological but the second neuro didn't as he's the one that first identified jutacortical lesions and the abnormal spinal related clinical signs (bilateral upper and lower hyperreflexia, positive Hoffman's bilaterally, positive Rhombergs.) and that you had "Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7." btw those specific clinical signs are actually associated with structural spinal conditions that cause cord compression.
I don't know much of anything when it comes to interpreting blood test results, off the top of my head a raised globulin has something to do with infection or inflammation, probably other things too but i'm sorry i don't know what they'd be...
I honestly don't think you would get many neurologists diagnosing MS with only having lesions in one of the Mcdonald locations, those clinical signs wouldn't count in regards to MS because they can be accounted for with the multi lever DDD and cord compression.
I can't explain why 3 neurologists with at least one of them being an MS specializing neuro, would think anyone was 'highly suggestive' of MS IF after multiple MRI's in 2+ years there still wasn't the typical additional MS related evidence to finally put MS at the top of the patients causes list.....putting their patient on 'wait and see' monitoring if MS was still a potential diagnosis and or treating the patient if there was sufficient diagnostic evidence of an unidentified-identified neurological condition, would of made sense so there has to be something that would make the lesions less likely to be demyelinating lesions.
Basically demyelinating lesions are more obvious when they light up with contrast but there are other specifics still looked for when there hasn't been contrast run eg location, size, shape, dawsons fingers, distribution - symmetrical etc contrast will only show lesions that are currently under attack but those same lesions are suppose to still be visible without contrast, without contrast though they basically can't say if they the blood brain barrier has been breached or not.
In some countries, government funded hospitals don't necessarily run contrast even when the patient is being investigated for MS, some will run contrast MRI's only after the first non contrast MRI's have shown lesions in locations consistent or more suggestive of MS there's probably many other reasons why but it's late over my side of the world and i've got to finish this so i can go to bed :D
I'll check if i've covered all your questions, if i see any thing i've missed i'll try to cover those tomorrow
Hope that helps.........JJ
COMMUNITY LEADER
Hugs back at you :D
I really don't like to speculate, more so when there are so many unknown factors.....
I think the specific MRI report your talking about had identified you had bilateral 'cerebral hemisphere' lesions..
"There are numerous tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm."
Anything to do with the cerebrum is called cerebral and anything to do with the cortex is referred to as cortical......To me from what you've mentioned, it looks like 'only' Neuro number two mentioned in his report that these 'cerebral lesions' were actually 'Juxtacortical'. If it's the MRI you have questions about, then the MRI report didn't specifically identify 'cortical' lesions (sub or juxta) but it did specifically identify cerebral lesions.
Quote from out wonderful Quix explaining juxtacortical...
"Juxtacortical is describing the area between the gray matter (the cortex), and the white matter." All areas of the brain have a juxtacortical region. Juxta" tells us that the lesion actually spans the junction between the two regions. This is an important finding because very few other diseases cause lesions in that area. When an MRI shows juxtacortical lesions in a patient with signs and symptoms suggestive of MS, the lesion is a strong bit of evidence pointing toward MS.
Mostly we hear that lesions are subcortical. This means that they are just "below" the cortical/white matter border, but not overlying it. Things like hypertension, age-related lesions, and migraines tend to occur also in the subcortical region. "
Whilst it's true juxtacortical lesions would be very significant and pointing towards MS, cerebral lesions wouldn't necessarily point towards conditions like MS because there are many other medical conditions that cause them........speculating here but 'may be', your assuming the neurologist that came after neuro no 2 are ignoring this particular 'MRI scan and report' for some reason but 'may be' what they are doing is actually disagreeing with the opinion that they are 'juxtacortical' and agreeing with the radiologist that they are the more common cerebral lesions?
It sounds more likely to me that there would be a disagreement in opinion that no one's willing to speak about, rather than medical negligence or a conspiracy type of thing going on.....but as i said i don't like to speculate so it's a guess!
Hope that helps...........JJ
I really don't like to speculate, more so when there are so many unknown factors.....
I think the specific MRI report your talking about had identified you had bilateral 'cerebral hemisphere' lesions..
"There are numerous tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm."
Anything to do with the cerebrum is called cerebral and anything to do with the cortex is referred to as cortical......To me from what you've mentioned, it looks like 'only' Neuro number two mentioned in his report that these 'cerebral lesions' were actually 'Juxtacortical'. If it's the MRI you have questions about, then the MRI report didn't specifically identify 'cortical' lesions (sub or juxta) but it did specifically identify cerebral lesions.
Quote from out wonderful Quix explaining juxtacortical...
"Juxtacortical is describing the area between the gray matter (the cortex), and the white matter." All areas of the brain have a juxtacortical region. Juxta" tells us that the lesion actually spans the junction between the two regions. This is an important finding because very few other diseases cause lesions in that area. When an MRI shows juxtacortical lesions in a patient with signs and symptoms suggestive of MS, the lesion is a strong bit of evidence pointing toward MS.
Mostly we hear that lesions are subcortical. This means that they are just "below" the cortical/white matter border, but not overlying it. Things like hypertension, age-related lesions, and migraines tend to occur also in the subcortical region. "
Whilst it's true juxtacortical lesions would be very significant and pointing towards MS, cerebral lesions wouldn't necessarily point towards conditions like MS because there are many other medical conditions that cause them........speculating here but 'may be', your assuming the neurologist that came after neuro no 2 are ignoring this particular 'MRI scan and report' for some reason but 'may be' what they are doing is actually disagreeing with the opinion that they are 'juxtacortical' and agreeing with the radiologist that they are the more common cerebral lesions?
It sounds more likely to me that there would be a disagreement in opinion that no one's willing to speak about, rather than medical negligence or a conspiracy type of thing going on.....but as i said i don't like to speculate so it's a guess!
Hope that helps...........JJ
2 Comments
Hi supermum_ms
Lots of thanks yet again for your fair and kind thoughts. It's the second neurologist that said juxtacortical right frontal lobe lesions. The fourth neurologist just last week when i asked him about juxtacortical, he said yes the lesions or on the tip of the juxtacortical.
The second neurologist is a professor in neurology. According to his colleague the spinal surgeon a highly intelligent man. Regardless of all of that, my questions are to the first neurologist. I have them written and hope that he will clear up my concerns about this Mri in particular.
If i have 19 lesions, largest measuring 6.6mm, i would like to know if any of the remaining lesions measure 2mm or above. I would like him to tell me the location of them. Now there is a measurement of up to 3.5mm white matter abnormality in the right frontal lobe according to my February 2015, and January 2016 Mri. I need to know if any of my lesions on my Mri 2014 are in the juxtacortical region.
If they are, i need to know why my first neurologist dismissed me by saying I don't know my own mind, and your symptoms are psychological. He referred me to a clinical psychologist. I have since stopped attending. I don't believe for one second my symptoms are psychological or functional like he said, and i told him so.
I am going to question him on contrast, Brain Mri 2014, what prompted him to say to me in order to rule in or out MS specifically by relying on the result of my lumbar puncture. I will ask him when he said to me you have a few more spots than on your previous Mri to tell me where the previous spots were located, and how many New extra spots were seen on my Mri 2014.
I will ask him if i meet any of the criteria regarding location of my lesions and clinical symptoms. Do you know supermum_ms if my lesions are numerous and if they are all in the juxtacortical region, along with my clinical symptoms, would MS be highly suggestive or not? Can numerous T2 lesions in the juxtacortical region give me a diagnosis of MS? This is what i need to know, because if the lesions are in the juxtacortical region what other diseases should they be looking for if it's not MS. What else causes lesions in the juxtacortical?
My neurological examination by the second neurologist, the professor found hyperreflexia in both upper and lower limbs, positive Hoffman's bilaterally, he wasn't sure if i could lift my right leg as well as my left, but his colleague the surgeon found the same but also positive Rhombergs. I see two on finger test, I have a fullness in my head all the time.
My vitamin B12 was 200 when i was admitted to hospital in September 2014, it's now 104. Don't know if there is any relevance to this, according to the fourth neurologist, my symptoms are not due to the vitamin B12 Deficiency, but should continue to be supplemented for it. Another thing is on my last blood results there is something about Raised Alpha 1 Globulin. IgA 2.10, IgG 8.60. IgM 0.77. Paraprotein Screen Negative.
So supermum_ms, i don't know what answers if anything i will get from the first neurologist, but there are serious questions that i need answers to.
Something has either been missed or not noted, I believe there is justifiable evidence of MS both on brain and clinical symptoms.
Hugs and thanks for your thoughts
Marian
Lots of thanks yet again for your fair and kind thoughts. It's the second neurologist that said juxtacortical right frontal lobe lesions. The fourth neurologist just last week when i asked him about juxtacortical, he said yes the lesions or on the tip of the juxtacortical.
The second neurologist is a professor in neurology. According to his colleague the spinal surgeon a highly intelligent man. Regardless of all of that, my questions are to the first neurologist. I have them written and hope that he will clear up my concerns about this Mri in particular.
If i have 19 lesions, largest measuring 6.6mm, i would like to know if any of the remaining lesions measure 2mm or above. I would like him to tell me the location of them. Now there is a measurement of up to 3.5mm white matter abnormality in the right frontal lobe according to my February 2015, and January 2016 Mri. I need to know if any of my lesions on my Mri 2014 are in the juxtacortical region.
If they are, i need to know why my first neurologist dismissed me by saying I don't know my own mind, and your symptoms are psychological. He referred me to a clinical psychologist. I have since stopped attending. I don't believe for one second my symptoms are psychological or functional like he said, and i told him so.
I am going to question him on contrast, Brain Mri 2014, what prompted him to say to me in order to rule in or out MS specifically by relying on the result of my lumbar puncture. I will ask him when he said to me you have a few more spots than on your previous Mri to tell me where the previous spots were located, and how many New extra spots were seen on my Mri 2014.
I will ask him if i meet any of the criteria regarding location of my lesions and clinical symptoms. Do you know supermum_ms if my lesions are numerous and if they are all in the juxtacortical region, along with my clinical symptoms, would MS be highly suggestive or not? Can numerous T2 lesions in the juxtacortical region give me a diagnosis of MS? This is what i need to know, because if the lesions are in the juxtacortical region what other diseases should they be looking for if it's not MS. What else causes lesions in the juxtacortical?
My neurological examination by the second neurologist, the professor found hyperreflexia in both upper and lower limbs, positive Hoffman's bilaterally, he wasn't sure if i could lift my right leg as well as my left, but his colleague the surgeon found the same but also positive Rhombergs. I see two on finger test, I have a fullness in my head all the time.
My vitamin B12 was 200 when i was admitted to hospital in September 2014, it's now 104. Don't know if there is any relevance to this, according to the fourth neurologist, my symptoms are not due to the vitamin B12 Deficiency, but should continue to be supplemented for it. Another thing is on my last blood results there is something about Raised Alpha 1 Globulin. IgA 2.10, IgG 8.60. IgM 0.77. Paraprotein Screen Negative.
So supermum_ms, i don't know what answers if anything i will get from the first neurologist, but there are serious questions that i need answers to.
Something has either been missed or not noted, I believe there is justifiable evidence of MS both on brain and clinical symptoms.
Hugs and thanks for your thoughts
Marian
JJ, I'm going to quote Quix here again re: juxtacortical lesions -- this is interesting:
From the thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/Neuro-thinks-my-juxtacortical-lesions-are-from-migraines-and-my-symptoms-are-from-depression-/show/1136818
Nickie - I have some "not so great" info. In my research for the CIS article I just wrote, I came acros a little discussion of the importance of juxtacortical lesion. This was from a discussion of findings and symptoms that the experts considered Major, Moderate and Minor "RED FLAGS". The major red flags wer ones that everyone agreed meant you should look hard "elsewhere" than MS for the diagnosis. The minor red flags showed an agreement that, while you should be on the lookout for other diseases with this finding, MS was still quite possible.
However, the Moderate Red Flags showed enormous disagreement among the experts, with some feeling that the finding meant it likely "wasn't MS" and some feeling that it was not a red flag at all.
Juxtacortical lesions - and lesions in the U-Fibers - were listed as moderate red flags to the diagnosis of MS. This means some of the experts felt that they pointed away from MS. When the majority of the lesions were of this type (especially at the vertex of the brain, at the external capsule and the insular regions) those experts felt the physician should investigate a disorder known as CADASIL, and completely rule out embolic infarction (stroke from small clots), and also rule out vasculitis (like from autoimmune disease).
So, I found evidence that some experts feel those juxtacortical lesions might point away from MS. Your neuro has somewhat of a leg to stand on there. Sorry.
CADASIL - is an inheritable disorder marked by frequent and young stokes and heart attacks. If you have such a family history, this should be investigated thoroughly.
If there is any concern about embolic (clots) infarction, you might need to have a cardiac study (I think also called a "bubble study") where they see if there is a hole in the heart that is allowing tiny clots to be thrown up to the brain causing these lesions. One of our longterm members just notified us that they had found this problem in her instead of MS. It can look at lot like MS.
Just a little more info to confuse the issue.
Quix
Quixotic1 | Jan 03, 2010
From the thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/Neuro-thinks-my-juxtacortical-lesions-are-from-migraines-and-my-symptoms-are-from-depression-/show/1136818
Nickie - I have some "not so great" info. In my research for the CIS article I just wrote, I came acros a little discussion of the importance of juxtacortical lesion. This was from a discussion of findings and symptoms that the experts considered Major, Moderate and Minor "RED FLAGS". The major red flags wer ones that everyone agreed meant you should look hard "elsewhere" than MS for the diagnosis. The minor red flags showed an agreement that, while you should be on the lookout for other diseases with this finding, MS was still quite possible.
However, the Moderate Red Flags showed enormous disagreement among the experts, with some feeling that the finding meant it likely "wasn't MS" and some feeling that it was not a red flag at all.
Juxtacortical lesions - and lesions in the U-Fibers - were listed as moderate red flags to the diagnosis of MS. This means some of the experts felt that they pointed away from MS. When the majority of the lesions were of this type (especially at the vertex of the brain, at the external capsule and the insular regions) those experts felt the physician should investigate a disorder known as CADASIL, and completely rule out embolic infarction (stroke from small clots), and also rule out vasculitis (like from autoimmune disease).
So, I found evidence that some experts feel those juxtacortical lesions might point away from MS. Your neuro has somewhat of a leg to stand on there. Sorry.
CADASIL - is an inheritable disorder marked by frequent and young stokes and heart attacks. If you have such a family history, this should be investigated thoroughly.
If there is any concern about embolic (clots) infarction, you might need to have a cardiac study (I think also called a "bubble study") where they see if there is a hole in the heart that is allowing tiny clots to be thrown up to the brain causing these lesions. One of our longterm members just notified us that they had found this problem in her instead of MS. It can look at lot like MS.
Just a little more info to confuse the issue.
Quix
Quixotic1 | Jan 03, 2010
COMMUNITY LEADER
Gosh Marian you've been through the ringer, no wonder you are doubting any and all your neurological opinions......HUGS!
Please please don't let past negative neuro experiences cloud the neurological opinion of your latest, you've been focused on MS for many years, any neuro you see today will be looking at diagnosing MS or an alternative based on all the diagnostic evidence they have in front of them, i totally understand why you feel dismissed but if you can, please try to not look back and focus on the diagnostic evidence that you have right now...
Keep in mind that you have misunderstood the 2010 Mcdonald criteria which requires a lot less than any previous ones did, as i mentioned above you need lesions in 2 or more of the specifically mentioned Mcdonald locations. MRI's are only one piece of evidence, definitely important diagnostic evidence but it's important to not over look any other diagnostic evidence that points towards or against a neurological condition like MS eg abnormal clinical signs of neurological damage, visual evoked potentials, peripheral nervous system tests, blood tests, LP etc etc
If i am understanding correctly, even after all the MRI reading issues, the end result from the 3rd MS specializing neurologist after getting a neuro-radiologist to review your collective MRI evidence, was that your brain MRI has been stable since 2011.
Neuro's have their own often stranger way of doing things, even when someone is officially diagnosed with MS, it's very common for the new neurologist to re-diagnose and or un-diagnose, so it's not actually odd for a neuro to only want to see the last MRI's and or none, they often prefer their own clinical exam/assessment results as well.
You are trying to understand a very complicated area of medicine, MRI technology has evolved in the last 5 years, and you can't accurately compare different strength MRI's eg a 3T will show approx 25% more than a 1.5T and a similar issue happens trying to compare MS protocol MRI's and standard MRI's, MS protocol shows more because of the smaller slices etc and there are other similar issues that have to do with the type of software used.
Even IF you only had your 2016 MRI and the 2015 MRI's to accurately compare, what has shown up wouldn't have put MS at the top of your possible causation list, because there isn't enough consistent or suggestive evidence to meet the Mcdonald criteria.
"Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter, unchanged in size and number since February 2015.".....everything else noted is normal, this type of MRI wouldn't be suggestive of a neurological condition like MS because other medical issues can have caused them.
"Appearances are stable since February 2015,. Small amount of white matter abnormality in the right frontal lobe which could be post-traumatic, ischemic, or demyelinating. No progression." this is actually very standard wording on MRI reports, the mention of demyelingation is nothing more than a possible explanations just like 'post-traumatic or ischemic' is, the neurologist decides what is the most likely causation based on all your diagnostic evidence.
Lesions can actually get bigger heal, disappear, shrink etc but they don't grow over the top of another, if anything you can only guess that the larger lesion is no longer evident or that it has shrunk. A black hole would be a giant leap to come up with, there isn't any evidence mentioned anywhere of you having any T1 hypointense lesions (black holes), so not a black hole.
Hope that helps a little.........JJ
Please please don't let past negative neuro experiences cloud the neurological opinion of your latest, you've been focused on MS for many years, any neuro you see today will be looking at diagnosing MS or an alternative based on all the diagnostic evidence they have in front of them, i totally understand why you feel dismissed but if you can, please try to not look back and focus on the diagnostic evidence that you have right now...
Keep in mind that you have misunderstood the 2010 Mcdonald criteria which requires a lot less than any previous ones did, as i mentioned above you need lesions in 2 or more of the specifically mentioned Mcdonald locations. MRI's are only one piece of evidence, definitely important diagnostic evidence but it's important to not over look any other diagnostic evidence that points towards or against a neurological condition like MS eg abnormal clinical signs of neurological damage, visual evoked potentials, peripheral nervous system tests, blood tests, LP etc etc
If i am understanding correctly, even after all the MRI reading issues, the end result from the 3rd MS specializing neurologist after getting a neuro-radiologist to review your collective MRI evidence, was that your brain MRI has been stable since 2011.
Neuro's have their own often stranger way of doing things, even when someone is officially diagnosed with MS, it's very common for the new neurologist to re-diagnose and or un-diagnose, so it's not actually odd for a neuro to only want to see the last MRI's and or none, they often prefer their own clinical exam/assessment results as well.
You are trying to understand a very complicated area of medicine, MRI technology has evolved in the last 5 years, and you can't accurately compare different strength MRI's eg a 3T will show approx 25% more than a 1.5T and a similar issue happens trying to compare MS protocol MRI's and standard MRI's, MS protocol shows more because of the smaller slices etc and there are other similar issues that have to do with the type of software used.
Even IF you only had your 2016 MRI and the 2015 MRI's to accurately compare, what has shown up wouldn't have put MS at the top of your possible causation list, because there isn't enough consistent or suggestive evidence to meet the Mcdonald criteria.
"Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter, unchanged in size and number since February 2015.".....everything else noted is normal, this type of MRI wouldn't be suggestive of a neurological condition like MS because other medical issues can have caused them.
"Appearances are stable since February 2015,. Small amount of white matter abnormality in the right frontal lobe which could be post-traumatic, ischemic, or demyelinating. No progression." this is actually very standard wording on MRI reports, the mention of demyelingation is nothing more than a possible explanations just like 'post-traumatic or ischemic' is, the neurologist decides what is the most likely causation based on all your diagnostic evidence.
Lesions can actually get bigger heal, disappear, shrink etc but they don't grow over the top of another, if anything you can only guess that the larger lesion is no longer evident or that it has shrunk. A black hole would be a giant leap to come up with, there isn't any evidence mentioned anywhere of you having any T1 hypointense lesions (black holes), so not a black hole.
Hope that helps a little.........JJ
1 Comments
Hi supermum_ms,
Many Thanks yet again for your very clear explanations on something i have difficulty with. There are i believe many loopholes in my case. I don't know the protocol when evaluating someone for MS. The neurologist who admitted me to hospital for assessing Demyelination, done an Mri without Contrast. I think it makes a difference in that if any lesions lit up, would it have made a difference? I will never know that because he didn't ask for contrast. Yet in letter to my GP he said there were no enhancing lesions. I mean they weren't, because he didn't give contrast. I have an issue with that firstly. The other thing is why specifically say to me that he was carrying out a lumbar puncture to rule in or out MS. This to me seems that before making the decision to do lumbar puncture, something must have prompted him on my brain Mri. My interpretation is if the lumbar puncture were positive MS would have been ruled in, meaning I must have met some criteria for him to specifically say rule MS in or out. My problem is numerous lesions were noted on this Mri, in both cerebral hemispheres, largest measuring 6.6mm. 19 in total is the number noted on the radiologists report.
Now i know juxtacortical has been mentioned by the second neurologist as being the location of these T2 hyperintensities, but what i would like to know is what why this Mri was somehow brushed under the carpet by three other neurologists? This Mri was carried out using the most up to date scanner, so it gives the best overall images. This Mri supermum_ms i believe has evidence on it that is relevant to MS in particular. This is my gut feeling.
Why else is everyone walking on eggshells, when it's brought up. It was very conveniently not given to two radiologists, and last week it was convenient for the neurologist to not want to view it, so I have a problem with this, because the radiologists report on this Mri, tells a different story.
My most recent two other MRI's make no reference to numerous, but makes reference to small amount of white matter abnormality.
I don't know, but from the very beginning something in my gut is telling me that this Mri has got something that is yet to clarified to me, which is why i have made a complaint.
I would rather be proved wrong than to keep going on like this. I want questions answered regarding that Mri, the relevance if any to the lesions and my on going symptoms.
I believe I'm on the right track. I will just have to wait for the neurologists reply to my written questions. I don't know if he will answer them or if he is responsible by the hospital to do so, but i won't know unless i ask.
Hugs
Marian
Many Thanks yet again for your very clear explanations on something i have difficulty with. There are i believe many loopholes in my case. I don't know the protocol when evaluating someone for MS. The neurologist who admitted me to hospital for assessing Demyelination, done an Mri without Contrast. I think it makes a difference in that if any lesions lit up, would it have made a difference? I will never know that because he didn't ask for contrast. Yet in letter to my GP he said there were no enhancing lesions. I mean they weren't, because he didn't give contrast. I have an issue with that firstly. The other thing is why specifically say to me that he was carrying out a lumbar puncture to rule in or out MS. This to me seems that before making the decision to do lumbar puncture, something must have prompted him on my brain Mri. My interpretation is if the lumbar puncture were positive MS would have been ruled in, meaning I must have met some criteria for him to specifically say rule MS in or out. My problem is numerous lesions were noted on this Mri, in both cerebral hemispheres, largest measuring 6.6mm. 19 in total is the number noted on the radiologists report.
Now i know juxtacortical has been mentioned by the second neurologist as being the location of these T2 hyperintensities, but what i would like to know is what why this Mri was somehow brushed under the carpet by three other neurologists? This Mri was carried out using the most up to date scanner, so it gives the best overall images. This Mri supermum_ms i believe has evidence on it that is relevant to MS in particular. This is my gut feeling.
Why else is everyone walking on eggshells, when it's brought up. It was very conveniently not given to two radiologists, and last week it was convenient for the neurologist to not want to view it, so I have a problem with this, because the radiologists report on this Mri, tells a different story.
My most recent two other MRI's make no reference to numerous, but makes reference to small amount of white matter abnormality.
I don't know, but from the very beginning something in my gut is telling me that this Mri has got something that is yet to clarified to me, which is why i have made a complaint.
I would rather be proved wrong than to keep going on like this. I want questions answered regarding that Mri, the relevance if any to the lesions and my on going symptoms.
I believe I'm on the right track. I will just have to wait for the neurologists reply to my written questions. I don't know if he will answer them or if he is responsible by the hospital to do so, but i won't know unless i ask.
Hugs
Marian
Hi aspen2,
Many thanks for your kind thoughts. I've just been in contact with the hospital to talk with the complaints manager. I am to write all the questions i have to him, and he will forward them onto the Neurologist.
I hope that the Neurologist will addresses them. My 2014 Mri is the one i want to get answers on. It was carried out at his request in the hospital. I understand what you mean about different places having different machines, but i would have thought for comparison, it would have been important to include it.
The other thing is last week the Neurologist i went to see, didn't want to view it. It upset me, because i thought neurologists would view these MRI's to compare, but he said only recent one is all he needed. Yet on the letter for my appointment, it asked to bring any previous images along.
I am really confused, about this Mri in particular. My gut feeling is there is evidence on it to suggest something is relevant. I could be wrong, but only way to find out is ask questions.
I paid a lot of money for a neuroradiologisit to view all my MRI's, but as you know it was not given for viewing, and only because i asked for the report i wouldn't have been any the wiser. I took the Neurologists word in London that all were viewed.
I really don't know what to expect now, but in my gut i believe something is on that Mri, that could perhaps answer a lot of questions.
I have sent you a private message :)
Marian.
Many thanks for your kind thoughts. I've just been in contact with the hospital to talk with the complaints manager. I am to write all the questions i have to him, and he will forward them onto the Neurologist.
I hope that the Neurologist will addresses them. My 2014 Mri is the one i want to get answers on. It was carried out at his request in the hospital. I understand what you mean about different places having different machines, but i would have thought for comparison, it would have been important to include it.
The other thing is last week the Neurologist i went to see, didn't want to view it. It upset me, because i thought neurologists would view these MRI's to compare, but he said only recent one is all he needed. Yet on the letter for my appointment, it asked to bring any previous images along.
I am really confused, about this Mri in particular. My gut feeling is there is evidence on it to suggest something is relevant. I could be wrong, but only way to find out is ask questions.
I paid a lot of money for a neuroradiologisit to view all my MRI's, but as you know it was not given for viewing, and only because i asked for the report i wouldn't have been any the wiser. I took the Neurologists word in London that all were viewed.
I really don't know what to expect now, but in my gut i believe something is on that Mri, that could perhaps answer a lot of questions.
I have sent you a private message :)
Marian.
Hi again supermum_ms
My last post i meant to say the last neurologist i saw last week, did not view the images on my 2014 Mri, just skimmed through the list of different sequences.
This is my latest Mri Report from January 2016. It was compared to my February 2015.
This is the report.
Mild inflammatory mucosal thickening involving the maxillary and ethmoid sinuses bilaterally.
Normal Ventricular system.
Prominent normal perivascular spaces again seen bilaterally.
Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter, unchanged in size and number since February 2015. No larger white matter abnormality.
No intracranial mass, haemorrhage, restricted diffusion or larger white matter abnormality.
Post contrast imaging does not show any abnormal enhancement in the right frontal lobe or elsewhere.
No abnormal meningeal enhancement.
In particular, with respect to the patients poor balance, no posterior fossa abnormality is visible.
No pituitary mass. No cranio-cervical junction abnormality.
No abnormality visible in the cervical cord down to C-4 level.
Appearances are stable since February 2015,. Small amount of white matter abnormality in the right frontal lobe which could be post-traumatic, ischemic, or demyelinating. No progression.
Superman_ms , in your knowledge, where is the 6.6mm lesion? Has one grown over the other, is there a black hole? There are questions that need answering i feel, because this radiologist was shown my 2014 Mri in March 2015, i personally asked that it be compared to my 2014 one. I didn't get an addendum, or anything in writing just one of his colleagues said he said No change, but she did say that i should see another neurologist. So too much coincidences for my liking. I don't know what to make of it, which is why i want to discuss it.
Following my Mri 2015, my neurologist at that time the second one to be exact, apparently rang the spinal surgeon and told him not to proceed with spinal decompression. Now this neurologist referred me to his colleague the surgeon, the surgeon said i had moderate Stenosis, and that it would be an option to have surgery, i agreed to have the surgery, until i get a call personally from the surgeon saying, my neurologist is a highly intelligent man and that it's very rare for him to tell the surgeon not to proceed.
I returned to the Neurologist, and he said it's rare he would call a multidisciplinary meeting but in my case, he would. I don't know, but i feel as though this neurologist was suspicious of something. He later wrote in letter, that my risk to develop MS was low, but nonetheless i should be clinically reviewed, and MRI's carried out on at least an annual basis.
Then last week, i have a neurologist telling me, no more MRI's, no more reviews, put it to bed he said. One thing this neurologist referred to was, that i may have a bit of fluid, but he said this kind of as though it meant nothing. I asked for him to elaborate in an e-mail, because at the time he was moving so fast from one thing to the other.
I got a reply, he said he was referring to normal cerebral fluid that can also have a white appearance on T2 Mri.
Sorry supermum_ms, for such a long post, but I'm not at all well, and I know something is not right, another thing i went to my GP, the following day after seeing this last neurologist, upset that he had been so casual and dismissive. She has decided to get an occupational therapist to come to my house to assess if anything is needed to help me.
Marian
My last post i meant to say the last neurologist i saw last week, did not view the images on my 2014 Mri, just skimmed through the list of different sequences.
This is my latest Mri Report from January 2016. It was compared to my February 2015.
This is the report.
Mild inflammatory mucosal thickening involving the maxillary and ethmoid sinuses bilaterally.
Normal Ventricular system.
Prominent normal perivascular spaces again seen bilaterally.
Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter, unchanged in size and number since February 2015. No larger white matter abnormality.
No intracranial mass, haemorrhage, restricted diffusion or larger white matter abnormality.
Post contrast imaging does not show any abnormal enhancement in the right frontal lobe or elsewhere.
No abnormal meningeal enhancement.
In particular, with respect to the patients poor balance, no posterior fossa abnormality is visible.
No pituitary mass. No cranio-cervical junction abnormality.
No abnormality visible in the cervical cord down to C-4 level.
Appearances are stable since February 2015,. Small amount of white matter abnormality in the right frontal lobe which could be post-traumatic, ischemic, or demyelinating. No progression.
Superman_ms , in your knowledge, where is the 6.6mm lesion? Has one grown over the other, is there a black hole? There are questions that need answering i feel, because this radiologist was shown my 2014 Mri in March 2015, i personally asked that it be compared to my 2014 one. I didn't get an addendum, or anything in writing just one of his colleagues said he said No change, but she did say that i should see another neurologist. So too much coincidences for my liking. I don't know what to make of it, which is why i want to discuss it.
Following my Mri 2015, my neurologist at that time the second one to be exact, apparently rang the spinal surgeon and told him not to proceed with spinal decompression. Now this neurologist referred me to his colleague the surgeon, the surgeon said i had moderate Stenosis, and that it would be an option to have surgery, i agreed to have the surgery, until i get a call personally from the surgeon saying, my neurologist is a highly intelligent man and that it's very rare for him to tell the surgeon not to proceed.
I returned to the Neurologist, and he said it's rare he would call a multidisciplinary meeting but in my case, he would. I don't know, but i feel as though this neurologist was suspicious of something. He later wrote in letter, that my risk to develop MS was low, but nonetheless i should be clinically reviewed, and MRI's carried out on at least an annual basis.
Then last week, i have a neurologist telling me, no more MRI's, no more reviews, put it to bed he said. One thing this neurologist referred to was, that i may have a bit of fluid, but he said this kind of as though it meant nothing. I asked for him to elaborate in an e-mail, because at the time he was moving so fast from one thing to the other.
I got a reply, he said he was referring to normal cerebral fluid that can also have a white appearance on T2 Mri.
Sorry supermum_ms, for such a long post, but I'm not at all well, and I know something is not right, another thing i went to my GP, the following day after seeing this last neurologist, upset that he had been so casual and dismissive. She has decided to get an occupational therapist to come to my house to assess if anything is needed to help me.
Marian
5 Comments
If there are black holes, they would be noted by the radiologist. Lesions can come and go.
Definitely a good idea to get symptom relief while you are stalled with respect to a diagnosis. I had PT, OT, bracing, acupuncture, a boatload of specialists in other areas -- you name it -- prior to diagnosis. I had to come to terms with the fact that it's not ms until it looks like ms to the specialists who do the diagnosing.
In fact, it was the input of these other specialists that finally convinced my neurologist.
With respect to the McDonald criteria: copied from wiki:
Dissemination in space, demonstrated by
1T2 lesion in at least two MS typical CNS regions
(periventricular, juxtacortical, infratorial, spinal cord);
OR
Await further clinical attack implicating a different
CNS site
Unfortunately, these days it appears that neurologists are less concerned with the "further clinical attack" portion of this, and want to see lesions in at least two MS typical regions to prove dissemination in space.
I ended up seeing a counselor .. limbo is a tough road .. it might help you as well.
Definitely a good idea to get symptom relief while you are stalled with respect to a diagnosis. I had PT, OT, bracing, acupuncture, a boatload of specialists in other areas -- you name it -- prior to diagnosis. I had to come to terms with the fact that it's not ms until it looks like ms to the specialists who do the diagnosing.
In fact, it was the input of these other specialists that finally convinced my neurologist.
With respect to the McDonald criteria: copied from wiki:
Dissemination in space, demonstrated by
1T2 lesion in at least two MS typical CNS regions
(periventricular, juxtacortical, infratorial, spinal cord);
OR
Await further clinical attack implicating a different
CNS site
Unfortunately, these days it appears that neurologists are less concerned with the "further clinical attack" portion of this, and want to see lesions in at least two MS typical regions to prove dissemination in space.
I ended up seeing a counselor .. limbo is a tough road .. it might help you as well.
Forgot to add, lesions in other areas are less diagnosable for ms because they also possible due to other explanations. And with the above quote -- AT least two MS typical CNS regions of the areas listed.
Ugh, wish I could get my thoughts in line in one answer like JJ :) ... were all your mris done at the same location? neurologists are less likely to do comparisons if the imaging was done at different centres due to differences in software and setup.
Btw I've sent you a private message :).
Btw I've sent you a private message :).
Hi aspen2,
I'm really sorry but i can't seem to highlight my letters on my tablet which is needed to send you a private message. Sorry about this. Thanks for your thoughts and kindness. Regarding your private message earlier, for now i will leave it until i get a proper computer.
Will keep the info for future reference.
Hugs
Marian
I'm really sorry but i can't seem to highlight my letters on my tablet which is needed to send you a private message. Sorry about this. Thanks for your thoughts and kindness. Regarding your private message earlier, for now i will leave it until i get a proper computer.
Will keep the info for future reference.
Hugs
Marian
Yes, I wondered if it was a MedHelp glitch! Take care :).
Hi superman_ms
Really appreciate your thoughts and the time you took to explain a lot of what is very confusing and i believe questionable.
My issues are specifically regarding the juxtacortical region. I don't know why there has been so much confusion surrounding my brain Mri 2014 for me. It may well be all coincidental.
The report from this Mri notes, what you outlined above. I don't know why a neurologist would say to someone i am doing a lumbar puncture to rule in or out MS, following this Mri. I have learned since that lumbar puncture alone is not a given for including or excluding MS.
I then go and see a second neurologist. I bring this Mri with me. He decides to do his own Mri with Contrast, the 2014 Mri no contrast was given. Ok so i have the second Mri in February 2015. The radiologist at the time queried that no imaging had been given to him for comparison or clinical question for this Mri. Done know if this is normal protocol, after all the second neuro could have given it and a question as to why he ordered it. He didn't.
Third neurologist i go and see is an MS specialist in London. I bring my 2014 Mri, and my 2015 Mri with me along with older scans. This neurologist made it very clear at the time that it would be important for a neuroradiologisit to view my images. I got a letter back from the Neurologist saying he had received back my Mri report from the neuroradiologisit and there has been no change on the brain since 2011. I assumed this included my 2014 Brain Mri. It was months later, when I asked for a copy of the neuroradiologisit report, that i found my 2014 Mri was not listed as being viewed.
I was taken aback by this, and got in contact with London. The neuroradiologisit agreed to view this Mri and My 2016 Mri free of charge. Her report came back, basically saying the paracheyma lesions were a common incidental finding on my 2014 Mri, and no change and are essentially stable for many years.
I just attended a new neurologist, last week. His colleagues are the first neurologist and the second neurologist here in Ireland. I'm not sure if he knows the Neurologist in London. Anyway i bring along my discs, 2014, 2015, 2016. He wanted to look at the most recent ones, and when i asked him to look at the 2014 Mri, he said i don't need past MRI's, just latest ones. I thought that odd, I asked him again to look at it, i felt his unwillingness to do so. I felt he didn't want to, he did when i asked again but didn't actually bring up the I'm, just skimmed over the list of different images, and left it at that. Diagnosis Chronic fatigue type syndrome / Fibromyalgia.
I believe either a lesion has been missed or not noted somewhere along the way. I may be wrong, but I need to question someone on this.
I would appreciate what you read into this if anything, I just felt it very odd that three neurologists, it seems to me avoided this Mri in someway.
Hugs Marian 13
Really appreciate your thoughts and the time you took to explain a lot of what is very confusing and i believe questionable.
My issues are specifically regarding the juxtacortical region. I don't know why there has been so much confusion surrounding my brain Mri 2014 for me. It may well be all coincidental.
The report from this Mri notes, what you outlined above. I don't know why a neurologist would say to someone i am doing a lumbar puncture to rule in or out MS, following this Mri. I have learned since that lumbar puncture alone is not a given for including or excluding MS.
I then go and see a second neurologist. I bring this Mri with me. He decides to do his own Mri with Contrast, the 2014 Mri no contrast was given. Ok so i have the second Mri in February 2015. The radiologist at the time queried that no imaging had been given to him for comparison or clinical question for this Mri. Done know if this is normal protocol, after all the second neuro could have given it and a question as to why he ordered it. He didn't.
Third neurologist i go and see is an MS specialist in London. I bring my 2014 Mri, and my 2015 Mri with me along with older scans. This neurologist made it very clear at the time that it would be important for a neuroradiologisit to view my images. I got a letter back from the Neurologist saying he had received back my Mri report from the neuroradiologisit and there has been no change on the brain since 2011. I assumed this included my 2014 Brain Mri. It was months later, when I asked for a copy of the neuroradiologisit report, that i found my 2014 Mri was not listed as being viewed.
I was taken aback by this, and got in contact with London. The neuroradiologisit agreed to view this Mri and My 2016 Mri free of charge. Her report came back, basically saying the paracheyma lesions were a common incidental finding on my 2014 Mri, and no change and are essentially stable for many years.
I just attended a new neurologist, last week. His colleagues are the first neurologist and the second neurologist here in Ireland. I'm not sure if he knows the Neurologist in London. Anyway i bring along my discs, 2014, 2015, 2016. He wanted to look at the most recent ones, and when i asked him to look at the 2014 Mri, he said i don't need past MRI's, just latest ones. I thought that odd, I asked him again to look at it, i felt his unwillingness to do so. I felt he didn't want to, he did when i asked again but didn't actually bring up the I'm, just skimmed over the list of different images, and left it at that. Diagnosis Chronic fatigue type syndrome / Fibromyalgia.
I believe either a lesion has been missed or not noted somewhere along the way. I may be wrong, but I need to question someone on this.
I would appreciate what you read into this if anything, I just felt it very odd that three neurologists, it seems to me avoided this Mri in someway.
Hugs Marian 13
Hi and thanks for your reply.
My interpretation of the McDonald Criteria was 2 or more lesions in one of the four regions. I thought because my two lesions were in the juxtacortical region along with my symptoms were justifiable MS being more than likely.
This is why i want to make a complaint, to the hospital. I was under the care of my first neurologist at the time because he admitted me to hospital to carry out tests for MS. This Mri was the reason he carried out lumbar puncture, which was negative. At the time he said i had some extra few spots than i had before and he wanted lumbar puncture to rule in or out MS. He ruled it out definitely based on my Lumbar result.
My vitamin B12 at the time was 200. It is now 104, am having injections to help that. All in all I think it's best that considering, i still have double vision and balance issues, i would like to discuss this Mri in particular with this, neurologist. I have asked to do this before by writing to him, but he wasn't interested, which is why he sent me for another opinion, diagnosis given by his colleague chronic fatigue type of / Fibromyalgia. That consultation was a farse, as i felt pre judged and taken for some kind of nut.
I don't believe it's not MS, not when i have lesions in a region of the brain that is questionable for MS. I believe it needs to be thrashed out because i am very unwell.
Thanks again for your thoughts, much appreciated.
My interpretation of the McDonald Criteria was 2 or more lesions in one of the four regions. I thought because my two lesions were in the juxtacortical region along with my symptoms were justifiable MS being more than likely.
This is why i want to make a complaint, to the hospital. I was under the care of my first neurologist at the time because he admitted me to hospital to carry out tests for MS. This Mri was the reason he carried out lumbar puncture, which was negative. At the time he said i had some extra few spots than i had before and he wanted lumbar puncture to rule in or out MS. He ruled it out definitely based on my Lumbar result.
My vitamin B12 at the time was 200. It is now 104, am having injections to help that. All in all I think it's best that considering, i still have double vision and balance issues, i would like to discuss this Mri in particular with this, neurologist. I have asked to do this before by writing to him, but he wasn't interested, which is why he sent me for another opinion, diagnosis given by his colleague chronic fatigue type of / Fibromyalgia. That consultation was a farse, as i felt pre judged and taken for some kind of nut.
I don't believe it's not MS, not when i have lesions in a region of the brain that is questionable for MS. I believe it needs to be thrashed out because i am very unwell.
Thanks again for your thoughts, much appreciated.
Actually, the McDonald Criteria states that you would need lesions in at least 2 out of 4 DIFFERENT areas of the central nervous system to meet dissemination in space (DIS) criteria (juxtacortical, periventricular, infratentorial, spinal cord). The lesions also have to be characteristic of ms plaque, which is a certain shape. My lesions were a similar size to yours and neurologists consider them far too small. Only a neurologist will be able to decide whether your lesions are characteristic of ms plaque. It's not just about location.
I don't believe complaining to the hospital would be helpful for you in the long run. There are many other things that can cause lesions, and there is nothing there that shouts ms at this point.
Possibly you could arrange a referral to an ms specialist to go over your scans with you (I'm assuming none of the neuros you saw were ms neuros). Have you had any other testing? Neuro exam? Lumbar puncture?
It's so frustrating to not have answers; I know .. I was in limbo for three years. Unfortunately neurological diagnoses can take a long time ... whether they end up ms or other conditions. Hang in there.
I don't believe complaining to the hospital would be helpful for you in the long run. There are many other things that can cause lesions, and there is nothing there that shouts ms at this point.
Possibly you could arrange a referral to an ms specialist to go over your scans with you (I'm assuming none of the neuros you saw were ms neuros). Have you had any other testing? Neuro exam? Lumbar puncture?
It's so frustrating to not have answers; I know .. I was in limbo for three years. Unfortunately neurological diagnoses can take a long time ... whether they end up ms or other conditions. Hang in there.
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I honestly felt before i tried to explain the Mcdonald Criteria, I needed to go through all your MRI specifics, relevant neurological information, diagnosed conditions etc etc that you'd mentioned prior to work out if MS was the 'only' medical explanation on your list...
Information you've previously mentioned:
"Result: Normal ventricular system.
No visible intracranial mass or haemorrhage. No pituitary mass.
No restricted diffusion.
Prominent right lenticulostriate perivascular spaces.
Small number of focal 2-3 mm diameter white matter abnormalities noted in the right frontal lobe, best seen on inversion recovery imaging, which could represent previous vascular or post-traumatic lesions. " .....what you wrote regarding your 2015 brain MRI
"Brain mri - 29-09-2014
No significant periventricular signal changes demonstrated. There are numerous tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm.
There is a tiny punctate sub 2mm lesion identified in the posterior aspect of the corpus callosum.
The orbits and globes appear normal with no significant optic nerve abnormality demonstrated.
The basal ganglia appear clear as is the proximal spinal cord.
conclusion; The number of high signal foci is more than expected for this age group while they could well relate to small vessel ischaemia demyelination would be in the differential. "
"Lymes negative. Lumbar puncture negative. Coag screen PT, APTT, + INR. Within range. Ena screen Negative. Vep within normal limits.Glucose normal. vitamin B12 normal. Serum folate low. ESR 29 high. ANA 320 high. "
"..... 2nd opinion. Last week i met a new neuro who ecamined me, looked at all my reports. looked at both MRI's and said he thought he could see some foci in februarys mri they were hard to see. Although the written report is normal. He said the pics were not as good as the mri i had done in September.
He said to me that he was not convinced i had ms but he would have to keep a very close eye on me. H e is doing a spinal mri in the new year and wants to get a brain mri in march or April 2015. He said my prognosis was good but didn't say what is wrong with me. He said i didn't have stroke or a brain tumor.He wants ANA and ESR blood tests repeated this week. "
"I reviewed MRI of brain from September and February 2014. The September MRI shows multi focal juxta cortical white matter hyperintensities......not involving the peri ventricular space or posterior fossa structure.Contrast not given. The quality of the February scan is less good but some faint abnormalities are apparent on FLAIR suggesting that those on the September scan are not new.......I have explained to her that she does not meet diagnostic criteria for MS and i have no structural evidence of other neurologic disease....
...The white matter changes on MRI are non specific and may be seen in smokers, migraine, connective tissue disorders or demylenating disease for example. I note the elevated ANA and ESR and would be grateful if you could repeat these together with a CRP and Ant Double Stranded DNA Anti body." ......regards your 2014 brain MRI's
"C3-4: Mild central disc protrusion slightly indenting the cord just right of the midline.
C4-5: Mild broad-based central and right paracentral disc bulge slightly indenting the cord.
C5-6: Large left paracentral disc protrusion causing cord compression and narrowing of the left lateral recess and foramen.
C6-7: Focal right paracentral disc protrusion compressing the cord and narrowing the right exit foramen and lateral recess.
Summary: Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7. " ......2015 spinal MRI which is now your structural evidence of other neurologic disease
*******
Connecting the Mcdonald criteria 2010 with your 2014-2015 diagnostic evidence:
"Diagnosis of MS requires elimination of more likely diagnoses and demonstration of dissemination of lesions in space and time"
"Dissemination in space, demonstrated by >1T2 lesion in at least two MS typical CNS regions (periventricular, juxtacortical, infratorial, spinal cord);"
"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;"
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-TipSheet_-2010-Revisions-to-the-McDonald-Criteria-for-the-Diagnosis-of-MS.pdf
From my understanding, the diagnostic evidence you had obtained in 2014-2015 was 'not specifically suggestive or consistent with MS', yes there are brain lesions but that doesn't mean MS is the only explanation possible or the most likely because there are many other medical explanations that cause non specific brain lesions.
IF you look at your mentioned evidence altogether, you didn't have any specifically identified demyelinating, T2 etc lesions in 2+ of the specific locations to meet the Mcdonald MS Criteria but actually did have specific evidence of "more likely diagnoses" because you have alternative medical explanations for your diagnostic MRI evidence, symptom type, pattern etc, and clinical signs ie dx migraine, dx multi level DDD and mulit level neurological compression, with the addition of chronic fatigue type syndrome / Fibromyalgia.
It might help to keep in mind that MS is only one medical explanation not the only explanation, and you have a lot of evidence suggestive-consistent with alternative medical causation and nothing really MS specific to put MS over and above those alternative diagnosis's.
Having alternative causation absolutely doesn't take anything away from what has happened to you or what your having to deal with every day!
Hope that helps...........JJ