Aa
Dissemination in Space and Time?
Hi guy's following my earlier post, I've just found another Mri report dating back to 2010. This Mri was done at the same hospital as my 2014 Mri.
It was with Contrast. This Mri was requested at the time by my endocrine specialist for pins and needles. This was the first time i met neurologist no 1. From then till now being his patient.
The report says notes a 3mm hyperintense signal in the subcortical area. No demyelination. Small vessel ischemia was likely.
Now if this 3mm focus is spoken about in 2010, 2011, 2012, 2015, 2016, what am i to make of the 2014 Brain Mri which states numerous high signal foci in both cerebral hemispheres, most numerous in the right frontal lobe largest measuring 6.6mm. Does this say i have a bigger lesion. What I'm not understanding here is that there is a measurement of 3mm in all MRI's since 2010, but in 2014, there is note of a measurement of 6.6mm as being the largest.
Can someone help me here in interpreting two different measurements?
If the 2010 and 2014 MRI's are from the same hospital and under the same neurologist, is something growing or have i one or two lesions, it's very confusing because, I have two different measurements.
Can you guy's make out if the 6.6mm lesion is relevant in all of this?
Thanks for your thoughts.
Marian
It was with Contrast. This Mri was requested at the time by my endocrine specialist for pins and needles. This was the first time i met neurologist no 1. From then till now being his patient.
The report says notes a 3mm hyperintense signal in the subcortical area. No demyelination. Small vessel ischemia was likely.
Now if this 3mm focus is spoken about in 2010, 2011, 2012, 2015, 2016, what am i to make of the 2014 Brain Mri which states numerous high signal foci in both cerebral hemispheres, most numerous in the right frontal lobe largest measuring 6.6mm. Does this say i have a bigger lesion. What I'm not understanding here is that there is a measurement of 3mm in all MRI's since 2010, but in 2014, there is note of a measurement of 6.6mm as being the largest.
Can someone help me here in interpreting two different measurements?
If the 2010 and 2014 MRI's are from the same hospital and under the same neurologist, is something growing or have i one or two lesions, it's very confusing because, I have two different measurements.
Can you guy's make out if the 6.6mm lesion is relevant in all of this?
Thanks for your thoughts.
Marian
COMMUNITY LEADER
Sorry if the sentence with the word 'hypothetical' in it made the essence of everything else i wrote less clear, that sentence was just bouncing around my head because of your LP 'what if' question, if it hadn't been so late over here i would of caught it before sending.
"Why did he refer specifically to MS being ruled in or out on lumbar puncture?What if the lumbar puncture was positive, Is ruled in MS?"
There was no intended meaning behind it, just a poorly worded comment....
"Why did he refer specifically to MS being ruled in or out on lumbar puncture?What if the lumbar puncture was positive, Is ruled in MS?"
There was no intended meaning behind it, just a poorly worded comment....
Hi
JJ did comment on looking for an answer to a hypothetical that has no relevance to the situation. To narrow MS down to ruling it in or out following my brain Mri is very relevant to the situation. How did he narrow it down to MS following my brain Mri? He is obliged to answer that question.
Everyone here knows just how difficult it is to diagnose MS, lot's and lot's of other Medical conditions have to be ruled out. Imagine if it were a Tumour he specifically referred to, and a biopsy is ordered to rule cancer in or out, Firstly a Tumour has certain characteristics seen on MRI, because the biopsy is negative doesn't mean it's not a Tumour and can still cause debilitating symptoms.
I don't think you guy's are getting what I'm saying here. He obviously saw something characteristic on my MRI regarding MS. Are you telling me he just ordered lumbar puncture to rule in or out MS just for the sake of it. I doubt very much that any neurologist would say such a thing unless they had evidence to say it.
He will be a superstar if he can answer how he came to one out of hundreds of causes.
Marian
JJ did comment on looking for an answer to a hypothetical that has no relevance to the situation. To narrow MS down to ruling it in or out following my brain Mri is very relevant to the situation. How did he narrow it down to MS following my brain Mri? He is obliged to answer that question.
Everyone here knows just how difficult it is to diagnose MS, lot's and lot's of other Medical conditions have to be ruled out. Imagine if it were a Tumour he specifically referred to, and a biopsy is ordered to rule cancer in or out, Firstly a Tumour has certain characteristics seen on MRI, because the biopsy is negative doesn't mean it's not a Tumour and can still cause debilitating symptoms.
I don't think you guy's are getting what I'm saying here. He obviously saw something characteristic on my MRI regarding MS. Are you telling me he just ordered lumbar puncture to rule in or out MS just for the sake of it. I doubt very much that any neurologist would say such a thing unless they had evidence to say it.
He will be a superstar if he can answer how he came to one out of hundreds of causes.
Marian
He is not obligated to answer you. Not saying it's right, but he may not. JJ did not say your questions were hypothetical. He is not obligated to answer a question, period.
Neurological dxes don't operate like other branches of medicine. There is a lot of waiting. You have to make peace with the wait. Difficult to do.
If you do get an answer he is a superstar.
Marian, my very first two sets of mris met the McDonald criteria for dissemination in space and time according to the radiologist. Two neurologists disagreed --the lesions were too small and not characteristic of ms plaque.
My diagnosis took three years ...
You will not convince an ms specialist. You can ask questions, sure. But they may or may not answer.
Okay I'm out. Hopefully you are able to find some answers ... Make sure you continue to follow up on other possibilities with your gp -- ms specialists are only concerned with ms and tend to lose interest Once they don't believe it is ms. (Possibly different in the U.S. When you are paying them).
Neurological dxes don't operate like other branches of medicine. There is a lot of waiting. You have to make peace with the wait. Difficult to do.
If you do get an answer he is a superstar.
Marian, my very first two sets of mris met the McDonald criteria for dissemination in space and time according to the radiologist. Two neurologists disagreed --the lesions were too small and not characteristic of ms plaque.
My diagnosis took three years ...
You will not convince an ms specialist. You can ask questions, sure. But they may or may not answer.
Okay I'm out. Hopefully you are able to find some answers ... Make sure you continue to follow up on other possibilities with your gp -- ms specialists are only concerned with ms and tend to lose interest Once they don't believe it is ms. (Possibly different in the U.S. When you are paying them).
Hi JJ,
Do you really believe that he asked for lumbar puncture to rule in or out MS without having no other evidence of it?
Marian
Do you really believe that he asked for lumbar puncture to rule in or out MS without having no other evidence of it?
Marian
1 Comments
Hi JJ,
On reading your last post, it seems as though you think neurologist no 1 is not obliged to answer my clinical questions. They are not hypothetical. I've asked questions on what he said. It's because of what he said regarding MS specifically that my questions are based on. Nothing wrong with that. I'm not pinning him to the wall, I'm going the right way about this, through his employer. I have rights too. I'm not obliged to accept unsatisfactory answers.
Why you asked am i questioning him above the others? Because he narrowed it down to one MS. That's why.
As I said the questions are not difficult unless there is truth in them. He should have no problem answering them if there isn't.
Hugs
Marian.
On reading your last post, it seems as though you think neurologist no 1 is not obliged to answer my clinical questions. They are not hypothetical. I've asked questions on what he said. It's because of what he said regarding MS specifically that my questions are based on. Nothing wrong with that. I'm not pinning him to the wall, I'm going the right way about this, through his employer. I have rights too. I'm not obliged to accept unsatisfactory answers.
Why you asked am i questioning him above the others? Because he narrowed it down to one MS. That's why.
As I said the questions are not difficult unless there is truth in them. He should have no problem answering them if there isn't.
Hugs
Marian.
Hi aspen2,
You're right, no one will diagnose MS until they are absolutely sure. I don't have diabetes, I don't have heart problems, neurologist no 2 is a stroke specialist, if he thought it were ischemia related, he would have referred me to the right specialist for that. He said I didn't have stroke.
My thyroid is under control, my. Blood is checked regularly every 3 months by my GP. They are able to tell me all the things i don't have, but can't say what is causing my symptoms.
I am now under no neurologist, the last one diagnosed chronic fatigue type syndrome / Fibromyalgia. He said he didn't need to see me back. I'm glad i have asked the questions i have. If nothing else it will hopefully clear up my concerns regarding MS.
MS has not been definitely excluded yet as far as I'm concerned. Neurologist no 1 also made a comment to me saying if i can get out of a car and walk into him, there's nothing wrong with me. It all began with this neurologist, so let him clarify thing's to me.
Thanks for your thoughts and i will be fine.
Hugs
Marian.
You're right, no one will diagnose MS until they are absolutely sure. I don't have diabetes, I don't have heart problems, neurologist no 2 is a stroke specialist, if he thought it were ischemia related, he would have referred me to the right specialist for that. He said I didn't have stroke.
My thyroid is under control, my. Blood is checked regularly every 3 months by my GP. They are able to tell me all the things i don't have, but can't say what is causing my symptoms.
I am now under no neurologist, the last one diagnosed chronic fatigue type syndrome / Fibromyalgia. He said he didn't need to see me back. I'm glad i have asked the questions i have. If nothing else it will hopefully clear up my concerns regarding MS.
MS has not been definitely excluded yet as far as I'm concerned. Neurologist no 1 also made a comment to me saying if i can get out of a car and walk into him, there's nothing wrong with me. It all began with this neurologist, so let him clarify thing's to me.
Thanks for your thoughts and i will be fine.
Hugs
Marian.
COMMUNITY LEADER
It's not uncommon to have a laundry list of 'possible dx's' that test evidence proves to be incorrect, lots of symptoms are commonly associated with many different types of medical condition, so there is nothing unique about running different types of tests looking for diagnostic evidence of a variety of different medical condition....'absence' of evidence is equally important!
"If I don't have MS, let him tell me he ruled it out on my brain Mri and my symptoms, like he ruled it out on lumbar puncture."
Your expecting something most doctor's will not give you, or anyone, an answer to a hypothetical that has no relevance to the situation and i don't know why you believe this particular doctor has an obligation to prove you wrong.....at best, based on his professional opinion and the test evidence 'he' had to go by, you didn't have any suggestive/consistent evidence of a demylinating disease from your 'collective' related tests results, over 4 years.
All the similar professional field related opinions that you've had since, including a professor, a private neuro-radiologist reviewing your MRI's, an MS specialising neuro and what ever type of neuro the last one was, they have all in fact concurred with neuro 1....
Keep in mind that if neuro 1 had actually diagnosed someone with MS based on the evidence you had or have now, all the neuro's who you've seen since would of disagreed with the diagnosis of MS and would probably un-diagnose......the minimum MRI requirements to meet the Mcdonald criteria are not there, and there is no evidence of demyelination over 6 years and there is no other suggestive MS related evidence to add to it and there are other diagnosed medical conditions that could account for the evidence and or clinical signs!
An LP is no longer required to dx MS, it has never been a 100% conclusive test for MS but when someones LP results have 2+ unique obands it is highly suggestive because there are very few conditions that cause unique obands, so those LP results are added to all the other 'suggestive or consistent' diagnostic evidence of demyelination, MS is usually pushed high up on their 'potential' causes list because MS is the most common type of the demyelinating conditions.
The reverse is true, the continual absence of suggestive or consistent diagnostic evidence of demyelination pushes MS very low on their 'potential' causes list, because it's inconsistent for MS to not show up year after year after year, test after test after test etc
"I don't believe that all people who are diagnosed with MS have Dawson's fingers , perventricular lesions,..."
I never suggested they 'all' did, i gave a list of examples that distinguish MS lesions from other types, and whilst it's true that MS is difficult to diagnose, someone without any MS lesion characteristics, 'and or' any typical findings 'and or' typical central nervous system symptoms or clinical signs etc would not 'typically' be dealing with a neurological condition like MS!
I'll sign off with a wish of luck in finding what your looking for.....JJ
"If I don't have MS, let him tell me he ruled it out on my brain Mri and my symptoms, like he ruled it out on lumbar puncture."
Your expecting something most doctor's will not give you, or anyone, an answer to a hypothetical that has no relevance to the situation and i don't know why you believe this particular doctor has an obligation to prove you wrong.....at best, based on his professional opinion and the test evidence 'he' had to go by, you didn't have any suggestive/consistent evidence of a demylinating disease from your 'collective' related tests results, over 4 years.
All the similar professional field related opinions that you've had since, including a professor, a private neuro-radiologist reviewing your MRI's, an MS specialising neuro and what ever type of neuro the last one was, they have all in fact concurred with neuro 1....
Keep in mind that if neuro 1 had actually diagnosed someone with MS based on the evidence you had or have now, all the neuro's who you've seen since would of disagreed with the diagnosis of MS and would probably un-diagnose......the minimum MRI requirements to meet the Mcdonald criteria are not there, and there is no evidence of demyelination over 6 years and there is no other suggestive MS related evidence to add to it and there are other diagnosed medical conditions that could account for the evidence and or clinical signs!
An LP is no longer required to dx MS, it has never been a 100% conclusive test for MS but when someones LP results have 2+ unique obands it is highly suggestive because there are very few conditions that cause unique obands, so those LP results are added to all the other 'suggestive or consistent' diagnostic evidence of demyelination, MS is usually pushed high up on their 'potential' causes list because MS is the most common type of the demyelinating conditions.
The reverse is true, the continual absence of suggestive or consistent diagnostic evidence of demyelination pushes MS very low on their 'potential' causes list, because it's inconsistent for MS to not show up year after year after year, test after test after test etc
"I don't believe that all people who are diagnosed with MS have Dawson's fingers , perventricular lesions,..."
I never suggested they 'all' did, i gave a list of examples that distinguish MS lesions from other types, and whilst it's true that MS is difficult to diagnose, someone without any MS lesion characteristics, 'and or' any typical findings 'and or' typical central nervous system symptoms or clinical signs etc would not 'typically' be dealing with a neurological condition like MS!
I'll sign off with a wish of luck in finding what your looking for.....JJ
Hi again supermum_ms,
I just wanted to thank you for all your thoughts. You've taken time to go through a lot with me. I know you see things differently to me and i understand why. My other medical conditions and my questions regarding MS.
I understand totally about the different scanners, but one thing is absolute in all of this and that's neurologist no 1, specifically being able to narrow down all other causes other than MS following my brain Mri 2014.
No ruling in our out, Stroke, tumour, migraine, thyroid issues, depression, infection, sinus issues. How did he narrow it down to MS? Could you give me your thoughts on that comment alone. If something doesn't look like MS, and be caused by numerous other medical conditions, why would he specifically say MS?
This to me says, he wasn't looking for anything else and had ruled out everything else. The blood work was all normal. Can anyone tell me how he came to the conclusion to specifically refer to MS? and not anything else?
Marian
I just wanted to thank you for all your thoughts. You've taken time to go through a lot with me. I know you see things differently to me and i understand why. My other medical conditions and my questions regarding MS.
I understand totally about the different scanners, but one thing is absolute in all of this and that's neurologist no 1, specifically being able to narrow down all other causes other than MS following my brain Mri 2014.
No ruling in our out, Stroke, tumour, migraine, thyroid issues, depression, infection, sinus issues. How did he narrow it down to MS? Could you give me your thoughts on that comment alone. If something doesn't look like MS, and be caused by numerous other medical conditions, why would he specifically say MS?
This to me says, he wasn't looking for anything else and had ruled out everything else. The blood work was all normal. Can anyone tell me how he came to the conclusion to specifically refer to MS? and not anything else?
Marian
Hi supermum_ms,
I don't believe that all people who are diagnosed with MS have Dawson's fingers , perventricular lesions, or other typical findings or indeed typical symptoms, which is why it's difficult to diagnose.
What i do know however is that demyelination is noted as a cause of these lesions since 2014, not on previous MRI's. Two causes were noted in 2014, ischemia and demyelination. Neurologist no 1, made no mention other than MS when speaking to me following that brain Mri. Do you think if it were more likely ischemic, he would have said so then? Why did he refer specifically to MS being ruled in or out on lumbar puncture? What if the lumbar puncture was positive, Is ruled in MS? He didn't say anything else.
Now one of my questions to him is if the lumbar puncture were positive what would have been his diagnosis? I know for sure that this result, either positive or negative is not a given that a person has MS.
But there is evidence of changes on my Mri, he said that himself, and I have clinical symptoms. It may well be an error, who's to say? The facts will speak for themselves. If I don't have MS, let him tell me he ruled it out on my brain Mri and my symptoms, like he ruled it out on lumbar puncture.
That's all I'm asking this guy. I have a right to ask him, he's the one who specifically spoke of MS, not me. He cannot rule it out on lumbar puncture results without first explaining how he came to advise lumbar puncture. It's obvious to me, that my 2014 Brain Mri prompted this and my symptoms.
Let him prove me wrong, I'm sure if i am he will be more than happy to answer simple questions. He is the one that admitted me, ordered a brain Mri, no contrast, yet he said no enhancing lesions. No cervical spine Mri. Maybe he is right, but he could also be wrong.
Answering these questions will one way or the other settle this. I'm not sure that everything he has said is correct, so to just explain thing's to me i fee is his duty.
If I'm wrong, he will be able to say it with the evidence he has before him. This is not about proving him wrong, it's about proving me wrong. I have had it with simple questions being pushed aside. There is nothing worse than ignorance.
As i said supermum_ms, I won't be easily ignored. He will i believe answer these questions. There are plenty of doctors who have misdiagnosed people. Surely if he is so confident that i don't have MS, the questions put to him he should be able to answer in his sleep. It's when it's difficult for him to answer them, then i have a big problem with that, and so would anyone else.
I wouldn't be asking these questions if i thought there was no evidence of MS.
Marian.
I don't believe that all people who are diagnosed with MS have Dawson's fingers , perventricular lesions, or other typical findings or indeed typical symptoms, which is why it's difficult to diagnose.
What i do know however is that demyelination is noted as a cause of these lesions since 2014, not on previous MRI's. Two causes were noted in 2014, ischemia and demyelination. Neurologist no 1, made no mention other than MS when speaking to me following that brain Mri. Do you think if it were more likely ischemic, he would have said so then? Why did he refer specifically to MS being ruled in or out on lumbar puncture? What if the lumbar puncture was positive, Is ruled in MS? He didn't say anything else.
Now one of my questions to him is if the lumbar puncture were positive what would have been his diagnosis? I know for sure that this result, either positive or negative is not a given that a person has MS.
But there is evidence of changes on my Mri, he said that himself, and I have clinical symptoms. It may well be an error, who's to say? The facts will speak for themselves. If I don't have MS, let him tell me he ruled it out on my brain Mri and my symptoms, like he ruled it out on lumbar puncture.
That's all I'm asking this guy. I have a right to ask him, he's the one who specifically spoke of MS, not me. He cannot rule it out on lumbar puncture results without first explaining how he came to advise lumbar puncture. It's obvious to me, that my 2014 Brain Mri prompted this and my symptoms.
Let him prove me wrong, I'm sure if i am he will be more than happy to answer simple questions. He is the one that admitted me, ordered a brain Mri, no contrast, yet he said no enhancing lesions. No cervical spine Mri. Maybe he is right, but he could also be wrong.
Answering these questions will one way or the other settle this. I'm not sure that everything he has said is correct, so to just explain thing's to me i fee is his duty.
If I'm wrong, he will be able to say it with the evidence he has before him. This is not about proving him wrong, it's about proving me wrong. I have had it with simple questions being pushed aside. There is nothing worse than ignorance.
As i said supermum_ms, I won't be easily ignored. He will i believe answer these questions. There are plenty of doctors who have misdiagnosed people. Surely if he is so confident that i don't have MS, the questions put to him he should be able to answer in his sleep. It's when it's difficult for him to answer them, then i have a big problem with that, and so would anyone else.
I wouldn't be asking these questions if i thought there was no evidence of MS.
Marian.
JJ has given you many clear explanations.
I discussed your increased lesion count already -- lesions may have been counted differently OR the increase was, say, in the subcortical region which is not an area peculiar to those with ms and is far more likely to be is ischaemic.
Had you had an increase in Dawson's fingers (linear along ventricles) or brainstorm, or spine ... Those would have been a meaningful (for ms) diagnosis.
Yes, something going on ... But big breath. Read over what has already been said. your symptoms have s lot of alternate causation possibilities. Some which you are diagnosed with already.
You don't have enough evidence. Whether that's because it's not ms, or because you just don't have enough evidence yet -- you are diagnostically at a standstill that you are not accepting.
This is where A counsellor really helped me.
During this time, if you want to research, make sure you've had mimics checked out. Have you been worked up for ischemia? Anti phospholipid syndrome? Thyroid issues? Diabetes? This is not generally done by the neurologist, but handled at the family doctor level. These things (and many others) can cause lesions in the brain.
I respect and understand the impossibility of feeling like you are doing nothing with continual sx. I've been there. But no one will diagnose you with ms before they know it for sure. The misdiagnosis rate is around 10% -- high -- and dmts are no picnic. Not to mention, being treated for ms could do a lot of damage if it's something else that was missed. Something else, not being treated, could be far more injurious.
Stick with, and be followed by, the same neuro. And try to visit my blog sometime.
(((Hugs)))
I discussed your increased lesion count already -- lesions may have been counted differently OR the increase was, say, in the subcortical region which is not an area peculiar to those with ms and is far more likely to be is ischaemic.
Had you had an increase in Dawson's fingers (linear along ventricles) or brainstorm, or spine ... Those would have been a meaningful (for ms) diagnosis.
Yes, something going on ... But big breath. Read over what has already been said. your symptoms have s lot of alternate causation possibilities. Some which you are diagnosed with already.
You don't have enough evidence. Whether that's because it's not ms, or because you just don't have enough evidence yet -- you are diagnostically at a standstill that you are not accepting.
This is where A counsellor really helped me.
During this time, if you want to research, make sure you've had mimics checked out. Have you been worked up for ischemia? Anti phospholipid syndrome? Thyroid issues? Diabetes? This is not generally done by the neurologist, but handled at the family doctor level. These things (and many others) can cause lesions in the brain.
I respect and understand the impossibility of feeling like you are doing nothing with continual sx. I've been there. But no one will diagnose you with ms before they know it for sure. The misdiagnosis rate is around 10% -- high -- and dmts are no picnic. Not to mention, being treated for ms could do a lot of damage if it's something else that was missed. Something else, not being treated, could be far more injurious.
Stick with, and be followed by, the same neuro. And try to visit my blog sometime.
(((Hugs)))
Hi Alex,
Demyelination is only mentioned as a cause in 2014 and 2016. MRI's. Any MRI's before that no demyelinating disease. My 2015 Mri makes no reference to Demyelination. Ischemia is mentioned in all MRI's from 2010-2016.
My 2015 Mri refers to post traumatic, vascular, or ischemia. My 2016 refers to post traumatic, ischemia, demyelination. Same radiologist compared these two MRI's.
Yes I had lumbar puncture. Negative. Lymes Negative. I am asking questions regarding my 2014 Mri because of the increase in number since 2012. I don't know if this is a normal increase. What about my symptoms are they connected to this increase or not. Is a 6.6mm lesion out of 19 causing my symptoms. I think the questions I have asked to my neurologist of 6 years are questions anyone in my situation would ask.
There is a change in number. There is a change in me. I think if these lesions or lesion the largest one 6.6 isn't connected to my symptoms, I'm sure he will assure me that they are of no concern. We'll see what he says.
Hugs
Marian.
Demyelination is only mentioned as a cause in 2014 and 2016. MRI's. Any MRI's before that no demyelinating disease. My 2015 Mri makes no reference to Demyelination. Ischemia is mentioned in all MRI's from 2010-2016.
My 2015 Mri refers to post traumatic, vascular, or ischemia. My 2016 refers to post traumatic, ischemia, demyelination. Same radiologist compared these two MRI's.
Yes I had lumbar puncture. Negative. Lymes Negative. I am asking questions regarding my 2014 Mri because of the increase in number since 2012. I don't know if this is a normal increase. What about my symptoms are they connected to this increase or not. Is a 6.6mm lesion out of 19 causing my symptoms. I think the questions I have asked to my neurologist of 6 years are questions anyone in my situation would ask.
There is a change in number. There is a change in me. I think if these lesions or lesion the largest one 6.6 isn't connected to my symptoms, I'm sure he will assure me that they are of no concern. We'll see what he says.
Hugs
Marian.
COMMUNITY LEADER
I'm honestly not confused........you are stuck believing minute differences between all your brain MRI results could 'only' mean MS, but avoid the more important fact that none of the multiple brain MRI's you've had since 2010 to 2016 have ever met the minimum MRI requirements to meet the Mcdonald criteria (DIT/DIS).
Your stuck believing you have to find something within your MRI's that will give you what the first neuro, professor of neurology, MS neuro, private neuro-radiologist and last neuro either couldn't find or ignored but avoid the more important.....the minute differences your focused on, still won't change that none of the multiple brain MRI's you've had since 2010 to 2016 have indicated demyelination is 'more likely' over the much more common micro vascular explanation.
You are stuck believing the number of lesions is more important than their location, size, shape, type, enhancing, perpendicular to the ventricles, dawsons fingers etc etc and avoid the more important......3T MRI's will show approx 25% 'more' lesions than a 1.5T MRI, standard MRI slices 5mm will show 'less' than MS protocol 3mm, software, spin, eco, flare, MRI research etc have changed between 2010-2016.
Some radiologists quantify everything no matter it's size, one reason is the older Mcdonald's had a much higher number requirement, another is its the radiologist's job to report and the neurologist job to determine significance to patients medical history, neurological conditions etc but there are more.
Radiologists don't typically quantify anything 1-3mm, anything less than 3mm is pin size to tiny and your MRI's predominantly state 2-3mm, the difference between 3mm and 3.5mm is microscopic and all your prior to 2014 and post brain MRI's don't mention anything being bigger than 3-3.5mm. The availability of 3T MRI's has only become more common in the last few years, .....there's just so many factors that make it not abnormal to have no number or different numbers mentioned on different MRI's, you can't automatically assume significance without including everything else that's significant.
You are stuck focusing on MS but avoiding that over this same time frame you have been dealing with a diagnosed thyroid condition, your thyroid removal was only a couple of years ago (probably on thyroid replacement drugs to keep it under control?) and most relevant to your MRI's is the association of thyroid conditions and frontal lobe lesions.
Your last spinal MRI 2015 shows a lot more specific multilevel abnormalities than your first did in 2010, that doesn't 100% mean your spinal issues have significantly worsened in 5 years, same things i've mentioned above apply to spinal MRI's too but there is more than enough change to warrant specific investigation.
Either your neuro had enough concern's about your spine to refer you for a surgical opinion or you went to see a spinal surgeon privately, but you've had a surgical consult, and there was enough for that particular surgeon to schedule corrective surgery......your neuro basically said he didn't believe you would be able to handle it 'at the time' so you didn't end up having the surgery.
Surgery on the spine is risking serious disability, its a hard recovery even when you don't have other medical issues happening at the same time, surgery isn't always the right thing if the out come is potentially worse in this moment in time, it doesn't mean you don't still have spinal damage because your not having surgery, or one neuro thinks it's not bad enough and another who doesn't think surgery is right for you.
Low risk of developing MS can apply to every person on the planet, even perfectly health people can have tiny foci show up in the frontal lobes, there is no 100% guarantee but this generally doesn't mean anything more than they don't believe MS is a potential explanation at some stage in the future.
It's not about ego, costs, simplicity of your questions etc your hunting for a neurological diagnostic error and i'm sorry, really sorry but even if neuro number 1 who've you've seen for years, and who dismissed you because in his professional opiniont your problems are psychological or functional does answer your questions the way you want, it will give you nothing to change that today, right now you still don't meet the minimum Mcdonald MRI requirements, 4 neurologist, one being a professor another being an MS specialising neuro do not believe you have MS and you absolutely do have alternative medical conditions that can account for the diagnostic evidence and symptoms you have.......I just can't see how you could ever be better position or what if anything there is to gain by asking nuero 1 for answers, to me he's the absolute worst choice out of the 4 neuro's or private neuro-radiologist you could of chosen!
I hope i've helped in some way and i wish you luck..........JJ
Your stuck believing you have to find something within your MRI's that will give you what the first neuro, professor of neurology, MS neuro, private neuro-radiologist and last neuro either couldn't find or ignored but avoid the more important.....the minute differences your focused on, still won't change that none of the multiple brain MRI's you've had since 2010 to 2016 have indicated demyelination is 'more likely' over the much more common micro vascular explanation.
You are stuck believing the number of lesions is more important than their location, size, shape, type, enhancing, perpendicular to the ventricles, dawsons fingers etc etc and avoid the more important......3T MRI's will show approx 25% 'more' lesions than a 1.5T MRI, standard MRI slices 5mm will show 'less' than MS protocol 3mm, software, spin, eco, flare, MRI research etc have changed between 2010-2016.
Some radiologists quantify everything no matter it's size, one reason is the older Mcdonald's had a much higher number requirement, another is its the radiologist's job to report and the neurologist job to determine significance to patients medical history, neurological conditions etc but there are more.
Radiologists don't typically quantify anything 1-3mm, anything less than 3mm is pin size to tiny and your MRI's predominantly state 2-3mm, the difference between 3mm and 3.5mm is microscopic and all your prior to 2014 and post brain MRI's don't mention anything being bigger than 3-3.5mm. The availability of 3T MRI's has only become more common in the last few years, .....there's just so many factors that make it not abnormal to have no number or different numbers mentioned on different MRI's, you can't automatically assume significance without including everything else that's significant.
You are stuck focusing on MS but avoiding that over this same time frame you have been dealing with a diagnosed thyroid condition, your thyroid removal was only a couple of years ago (probably on thyroid replacement drugs to keep it under control?) and most relevant to your MRI's is the association of thyroid conditions and frontal lobe lesions.
Your last spinal MRI 2015 shows a lot more specific multilevel abnormalities than your first did in 2010, that doesn't 100% mean your spinal issues have significantly worsened in 5 years, same things i've mentioned above apply to spinal MRI's too but there is more than enough change to warrant specific investigation.
Either your neuro had enough concern's about your spine to refer you for a surgical opinion or you went to see a spinal surgeon privately, but you've had a surgical consult, and there was enough for that particular surgeon to schedule corrective surgery......your neuro basically said he didn't believe you would be able to handle it 'at the time' so you didn't end up having the surgery.
Surgery on the spine is risking serious disability, its a hard recovery even when you don't have other medical issues happening at the same time, surgery isn't always the right thing if the out come is potentially worse in this moment in time, it doesn't mean you don't still have spinal damage because your not having surgery, or one neuro thinks it's not bad enough and another who doesn't think surgery is right for you.
Low risk of developing MS can apply to every person on the planet, even perfectly health people can have tiny foci show up in the frontal lobes, there is no 100% guarantee but this generally doesn't mean anything more than they don't believe MS is a potential explanation at some stage in the future.
It's not about ego, costs, simplicity of your questions etc your hunting for a neurological diagnostic error and i'm sorry, really sorry but even if neuro number 1 who've you've seen for years, and who dismissed you because in his professional opiniont your problems are psychological or functional does answer your questions the way you want, it will give you nothing to change that today, right now you still don't meet the minimum Mcdonald MRI requirements, 4 neurologist, one being a professor another being an MS specialising neuro do not believe you have MS and you absolutely do have alternative medical conditions that can account for the diagnostic evidence and symptoms you have.......I just can't see how you could ever be better position or what if anything there is to gain by asking nuero 1 for answers, to me he's the absolute worst choice out of the 4 neuro's or private neuro-radiologist you could of chosen!
I hope i've helped in some way and i wish you luck..........JJ
Hi,
I think the pro's can. 2010-2012 5-6 foci seen. 2014 and 19 are seen. 2-3 mm has been the measurement since 2010. 2014 a bigger measurement is given of 6.6mm.
To me this is something the pro's should be able to clarify. Is it a normal increase in two years? The increase was seen in 2014. My vision and balance problems started in 2014.
Symptoms and increase of 13 more high signal foci, largest measurement 6.6mm is i feel something that needs more clarification. I'm not looking for answers from you guy's. I just wanted to share with you my symptoms and results. For me it doesn't make sense, so that's why i am asking questions. Surely a neurologist knows this is or isn't a normal increase. Surely they know the location of these. What did they study in med school?
I believe that all will come right. I can't worry about the neurologists ego here. I think these questions are only difficult if there is truth in what i am saying. I could be totally wrong. Let's wait and see what reply i get. The questions are not difficult, certainly not in layman's terms. A neurologist who is a senior lecturer should find questions like these a breeze. I paid him enough. It's his job after all to satisfactorily clarify thing's that haven't been so far. I'm entitled to ask.
Thanks for your thoughts
Marian
I think the pro's can. 2010-2012 5-6 foci seen. 2014 and 19 are seen. 2-3 mm has been the measurement since 2010. 2014 a bigger measurement is given of 6.6mm.
To me this is something the pro's should be able to clarify. Is it a normal increase in two years? The increase was seen in 2014. My vision and balance problems started in 2014.
Symptoms and increase of 13 more high signal foci, largest measurement 6.6mm is i feel something that needs more clarification. I'm not looking for answers from you guy's. I just wanted to share with you my symptoms and results. For me it doesn't make sense, so that's why i am asking questions. Surely a neurologist knows this is or isn't a normal increase. Surely they know the location of these. What did they study in med school?
I believe that all will come right. I can't worry about the neurologists ego here. I think these questions are only difficult if there is truth in what i am saying. I could be totally wrong. Let's wait and see what reply i get. The questions are not difficult, certainly not in layman's terms. A neurologist who is a senior lecturer should find questions like these a breeze. I paid him enough. It's his job after all to satisfactorily clarify thing's that haven't been so far. I'm entitled to ask.
Thanks for your thoughts
Marian
1 Comments
The MRI reports say no demyelenating disease which is MS. That is curious. What does the neurologist say? I would go to the best MS Specialist in my area if it were me. If it is MS the Specialist will find it. I went to many neurologists who were not MS Specialists and was not diagnosed. Have you had a lumbar puncture yet? That is what got me my diagnosis. Have you been tested for Lyme?
Alex
Alex
Hi again supermum_ms,
I have my 2012 Brain Mri and 2011. One was done at an imaging clinic and the other was done in another hospital, not the one that 2014 was done.
2011 was done at the clinic.
Report: No significant focal abnormality has been demonstrated in the cerebral hemispheres, cerebellum, or brain stem. There is no evidence of a neoplasm or demyelinating disease.
Acute stroke sequences show no vascular abnormality.
The cerebellopontine angles are normal.
Normal examination.
2012 hospital Mri.
Technique Standard multiplanar protocol.
Findings: There are no features of demyelination. There are tiny approximately 6 supratentorial subcortical white matter signal abnormality is most numerous in the right frontal lobe, likely ischemic small vessel disease. Normal diffusion acquisitions.
Normal Ventricular system. The examination is otherwise unremarkable.
If 2012, notes approximately 6. 2014 notes 19. The maths tell me that's 13 extra in two years. July 2012 -September 2014 numerous high signal foci. Is it an increase of significance? To me personally i think that's a bit of a jump.
I don't know if this is normal this increase. Am glad i am asking questions. I think neurologist no 1 compared 2012 to 2014, because i asked this question before, and his Secretary said 2012.
I've asked the question again in my list of questions to him, what previous MRI was he referring to when he said i had a few extra spots than my previous Mri. 2010, notes 5-6, 2012 notes approximately 6. 2014 notes 19.
Sounds more than a few more to me.
Marian
I have my 2012 Brain Mri and 2011. One was done at an imaging clinic and the other was done in another hospital, not the one that 2014 was done.
2011 was done at the clinic.
Report: No significant focal abnormality has been demonstrated in the cerebral hemispheres, cerebellum, or brain stem. There is no evidence of a neoplasm or demyelinating disease.
Acute stroke sequences show no vascular abnormality.
The cerebellopontine angles are normal.
Normal examination.
2012 hospital Mri.
Technique Standard multiplanar protocol.
Findings: There are no features of demyelination. There are tiny approximately 6 supratentorial subcortical white matter signal abnormality is most numerous in the right frontal lobe, likely ischemic small vessel disease. Normal diffusion acquisitions.
Normal Ventricular system. The examination is otherwise unremarkable.
If 2012, notes approximately 6. 2014 notes 19. The maths tell me that's 13 extra in two years. July 2012 -September 2014 numerous high signal foci. Is it an increase of significance? To me personally i think that's a bit of a jump.
I don't know if this is normal this increase. Am glad i am asking questions. I think neurologist no 1 compared 2012 to 2014, because i asked this question before, and his Secretary said 2012.
I've asked the question again in my list of questions to him, what previous MRI was he referring to when he said i had a few extra spots than my previous Mri. 2010, notes 5-6, 2012 notes approximately 6. 2014 notes 19.
Sounds more than a few more to me.
Marian
Hi supermum_ms,
Thanks for your thoughts, and i appreciate your help. It's very confusing i know, but let me try and explain clearer. This i hope will help you understand better.
Let's begin with 2010. I started experiencing pins and needles, weakness. I was admitted under my endocrine specialist for a full body Mri including brain. The spinal Mri report in 2010 is as follows.
The whole spine was examined using T1 and T2 weighted imaging sequences. Pre and post contrast images were obtained. There is minor degenerative change at the C5-C6 level without evidence of significant disk herniation or root compression. The cervical cord, thoracic cord and conus appears unremarkable. No evidence of intrinsic cord disease. Neuro no 1 saw this result, this was the first time i met him.
2012: Cervical Spine Mri. May i add here requested by Neuro no 1. for pins and needles in both arms.
Report: Normal alignment. Normal cranial- cervical junction. Normal cord signal. Normal bone marrow signal.
C3-4: Reduced disc signal with preserved disc height. Central disc osteophyte complex causing mild central narrowing of the canal but no deformity of the cord and there remains CSF around the cord.
C4-5: Reduced disc signal with preserved disc height. Broad based disc osteophyte complex present. No notable canal narrowing. Mild right foraminal narrowing. Left foramen patent.
C5-6 : Reduced disc signal with preserved disc height. Larger broad based disc osteophyte complex more eccentric to the right side causing severe right foraminal narrowing. There is mild left foraminal narrowing. No canal stenosis.
C6-7: Central right paracentral disc osteophyte complex. This minimally narrows the cord but there is no compression of the cord. There is mild right foraminal narrowing. The left foramen is fully patent.
C7- T1 Normal appearing disc.
Neuro No 1 sent me to a spinal surgeon also in 2012. Surgeon said he wouldn't go near it. So that was that.
And you have the report of 2015 cervical spine. Surgery was offered, but then cancelled by neuro no 2. The surgery said at that time it was moderate Stenosis, but also said it would not help balance and visual symptoms that i have. It could help the heavy legs and urinary urgency. But he was told not to proceed.
Can i add here supermum_ms, that it is neurologist no 1 who said my symptoms were psychological. Neuro no 1 has got my questions now regarding my concerns. This neurologist I have been a patient of since 2010. 2013, I started to experience morning headaches, that lasted all day, the same time a numbness all over my body that lasted for seconds at a time for months along with the headaches. He prescribed topamax, and said the headaches were from migraine. 2014, Balance, and visual symptoms began.
You know the results of that Mri. Neurologist no 1, did not ask for a cervical Mri and he didn't order contrast. Yet when i returned to him following meeting neurologist no 2, he sarcastically said to me you went for a second opinion. What did neurologist no 2 make of you? I showed him neurologist no 2 letter. He said nothing. I showed him the spinal surgeon's letter, he commented, I suppose he wanted to do surgery on you.
He then examined me and commented, you have one lesion, as if this isn't causing my symptoms? Don't know what he meant. He then said my i didn't know my own mind, and that my symptoms were psychological. Referring me to a psychologist.
Also, supermum_ms, it is neurologist no 2, the professor who said i didn't meet consensus diagnostic criteria for MS. In his opinion my risk to develop it is low, nonetheless i should continue to monitored both clinically and with Mri on at least an annual basis.
Neuro no 4, said that I have chronic fatigue type syndrome / Fibromyalgia. When I asked him about the McDonald Criteria, he said i don't meet it because i don't have the Clinical symptoms of MS.
I hope my questions will be answered. A lesion could also be responsible for my symptoms. There are changes on my 2014 Brain Mri that I feel need to be clarified to me. I believe if it were as simple as degenerative disc disease, then I don't think neurologist no 2 would have cancelled surgery. He compared both 2012, and 2015 MRI's of the cervical spine. He said there was some worsening. He also said my symptoms were complex, and the recovery would perhaps be difficult for me.
I think neurologist no 1 should clarify the Clinical questions i sent him. I have been told today, that i should get a response from him. The complaints officer told me, that my questions are direct and they are all clinical questions. I might have to wait 2-3 weeks for a reply. If I'm not happy with the answers i receive, the hospital manager will be asked to look into this, but it may not come to that the complaints officer said.
It's great if my symptoms are not related to changes on my brain. But i have to ask these questions. Yes i have other medical conditions. But there's something else going on also. My vitamin B12 has dropped, I'm falling into thing's, I have blurring vision, double vision, drunkenness is best how i can describe it, wobbling, falling over, clumsiness. Exhaustion. It's like I'm not fully able to automatically do things, so what could cause these symptoms, spinal degenerative disease? Thyroid? Depression? Thyroid is under control. Depression is under control. No one seems to be talking to me regarding my spinal problems in the medical field. Just a couple of weeks back neurologist no 4 said he wouldn't go near my spine either. He said it's not that bad.
Sorry supermum_ms for such a long post. I don't know if you will understand it better. Because of this confusion, I'm glad for one that I've asked questions. It needs to sorted out.
Hugs and thanks for all your help and advice. My gut feeling is telling me there's more to my symptoms than meets the eye.
Marian
Thanks for your thoughts, and i appreciate your help. It's very confusing i know, but let me try and explain clearer. This i hope will help you understand better.
Let's begin with 2010. I started experiencing pins and needles, weakness. I was admitted under my endocrine specialist for a full body Mri including brain. The spinal Mri report in 2010 is as follows.
The whole spine was examined using T1 and T2 weighted imaging sequences. Pre and post contrast images were obtained. There is minor degenerative change at the C5-C6 level without evidence of significant disk herniation or root compression. The cervical cord, thoracic cord and conus appears unremarkable. No evidence of intrinsic cord disease. Neuro no 1 saw this result, this was the first time i met him.
2012: Cervical Spine Mri. May i add here requested by Neuro no 1. for pins and needles in both arms.
Report: Normal alignment. Normal cranial- cervical junction. Normal cord signal. Normal bone marrow signal.
C3-4: Reduced disc signal with preserved disc height. Central disc osteophyte complex causing mild central narrowing of the canal but no deformity of the cord and there remains CSF around the cord.
C4-5: Reduced disc signal with preserved disc height. Broad based disc osteophyte complex present. No notable canal narrowing. Mild right foraminal narrowing. Left foramen patent.
C5-6 : Reduced disc signal with preserved disc height. Larger broad based disc osteophyte complex more eccentric to the right side causing severe right foraminal narrowing. There is mild left foraminal narrowing. No canal stenosis.
C6-7: Central right paracentral disc osteophyte complex. This minimally narrows the cord but there is no compression of the cord. There is mild right foraminal narrowing. The left foramen is fully patent.
C7- T1 Normal appearing disc.
Neuro No 1 sent me to a spinal surgeon also in 2012. Surgeon said he wouldn't go near it. So that was that.
And you have the report of 2015 cervical spine. Surgery was offered, but then cancelled by neuro no 2. The surgery said at that time it was moderate Stenosis, but also said it would not help balance and visual symptoms that i have. It could help the heavy legs and urinary urgency. But he was told not to proceed.
Can i add here supermum_ms, that it is neurologist no 1 who said my symptoms were psychological. Neuro no 1 has got my questions now regarding my concerns. This neurologist I have been a patient of since 2010. 2013, I started to experience morning headaches, that lasted all day, the same time a numbness all over my body that lasted for seconds at a time for months along with the headaches. He prescribed topamax, and said the headaches were from migraine. 2014, Balance, and visual symptoms began.
You know the results of that Mri. Neurologist no 1, did not ask for a cervical Mri and he didn't order contrast. Yet when i returned to him following meeting neurologist no 2, he sarcastically said to me you went for a second opinion. What did neurologist no 2 make of you? I showed him neurologist no 2 letter. He said nothing. I showed him the spinal surgeon's letter, he commented, I suppose he wanted to do surgery on you.
He then examined me and commented, you have one lesion, as if this isn't causing my symptoms? Don't know what he meant. He then said my i didn't know my own mind, and that my symptoms were psychological. Referring me to a psychologist.
Also, supermum_ms, it is neurologist no 2, the professor who said i didn't meet consensus diagnostic criteria for MS. In his opinion my risk to develop it is low, nonetheless i should continue to monitored both clinically and with Mri on at least an annual basis.
Neuro no 4, said that I have chronic fatigue type syndrome / Fibromyalgia. When I asked him about the McDonald Criteria, he said i don't meet it because i don't have the Clinical symptoms of MS.
I hope my questions will be answered. A lesion could also be responsible for my symptoms. There are changes on my 2014 Brain Mri that I feel need to be clarified to me. I believe if it were as simple as degenerative disc disease, then I don't think neurologist no 2 would have cancelled surgery. He compared both 2012, and 2015 MRI's of the cervical spine. He said there was some worsening. He also said my symptoms were complex, and the recovery would perhaps be difficult for me.
I think neurologist no 1 should clarify the Clinical questions i sent him. I have been told today, that i should get a response from him. The complaints officer told me, that my questions are direct and they are all clinical questions. I might have to wait 2-3 weeks for a reply. If I'm not happy with the answers i receive, the hospital manager will be asked to look into this, but it may not come to that the complaints officer said.
It's great if my symptoms are not related to changes on my brain. But i have to ask these questions. Yes i have other medical conditions. But there's something else going on also. My vitamin B12 has dropped, I'm falling into thing's, I have blurring vision, double vision, drunkenness is best how i can describe it, wobbling, falling over, clumsiness. Exhaustion. It's like I'm not fully able to automatically do things, so what could cause these symptoms, spinal degenerative disease? Thyroid? Depression? Thyroid is under control. Depression is under control. No one seems to be talking to me regarding my spinal problems in the medical field. Just a couple of weeks back neurologist no 4 said he wouldn't go near my spine either. He said it's not that bad.
Sorry supermum_ms for such a long post. I don't know if you will understand it better. Because of this confusion, I'm glad for one that I've asked questions. It needs to sorted out.
Hugs and thanks for all your help and advice. My gut feeling is telling me there's more to my symptoms than meets the eye.
Marian
Neurology doesn't really work like that. Mapping lesions and their location to specific symptoms with that level of precision just isn't really possible.
I don't mean to imply I don't understand your concern, but your posts are going in such circles, I can only imagine how draining these thought processes are to you yourself. Clearly, we can't answer your questions here with the precision you desire. But honestly, I doubt the pros can either.
I don't mean to imply I don't understand your concern, but your posts are going in such circles, I can only imagine how draining these thought processes are to you yourself. Clearly, we can't answer your questions here with the precision you desire. But honestly, I doubt the pros can either.
Hi Alex,
Thanks for your thoughts.
There was mention of juxtacortical T2 lesions. I have disability. I cannot walk very far and my legs give way. I have become extremely slow since 2014. My main problem is banging into things. I walk like I'm drunk, I veer to the right and wobble. These are my symptoms which began in 2014. Balance and blurry vision. I have double vision all the time on finger test.
I feel a fullness in my head and i do get cluster headaches. This drunken feeling is there all the time, so I have to be careful i don't fall. I also find tasks difficult because of my balance.
I get a lot of night sweats. Of late my feet feel like there are needles being stuck in them. And I'm extremely fatigued.
I have asked the neurologist if the 6.6mm lesion may be causing my symptoms. I'm not sure if this lesion is in the left or right of my brain, and i don't know it's location. I think he should tell me this, at least i hope he will. This one lesion could or could not be causing my symptoms.
If it's not causing these symptoms, I'm sure he will confirm. Yes i have other medical conditions, but the symptoms i presented with in 2014 are here all the time.
I have asked him about 2 measurements. 6.6 and 3.5, if they are in any way related for my symptoms. I have asked about the increase in numbers as well. We'll see what he says. I just want clarification.
No I don't have lesions in the areas you have mentioned, but that doesn't mean either that the lesions i have are not causing my balance and visual symptoms.
I hope by asking these clinical questions, that he will set me straight. I could be wrong totally.
Marian
Thanks for your thoughts.
There was mention of juxtacortical T2 lesions. I have disability. I cannot walk very far and my legs give way. I have become extremely slow since 2014. My main problem is banging into things. I walk like I'm drunk, I veer to the right and wobble. These are my symptoms which began in 2014. Balance and blurry vision. I have double vision all the time on finger test.
I feel a fullness in my head and i do get cluster headaches. This drunken feeling is there all the time, so I have to be careful i don't fall. I also find tasks difficult because of my balance.
I get a lot of night sweats. Of late my feet feel like there are needles being stuck in them. And I'm extremely fatigued.
I have asked the neurologist if the 6.6mm lesion may be causing my symptoms. I'm not sure if this lesion is in the left or right of my brain, and i don't know it's location. I think he should tell me this, at least i hope he will. This one lesion could or could not be causing my symptoms.
If it's not causing these symptoms, I'm sure he will confirm. Yes i have other medical conditions, but the symptoms i presented with in 2014 are here all the time.
I have asked him about 2 measurements. 6.6 and 3.5, if they are in any way related for my symptoms. I have asked about the increase in numbers as well. We'll see what he says. I just want clarification.
No I don't have lesions in the areas you have mentioned, but that doesn't mean either that the lesions i have are not causing my balance and visual symptoms.
I hope by asking these clinical questions, that he will set me straight. I could be wrong totally.
Marian
COMMUNITY LEADER
I honestly don't know if any of us can keep straight all your information, i feel i've already answered everything as best i can, but the answers won't change.....your questions are basically the same as when i started trying to help, and i'm concerned there isn't enough information, I can't say that something that calms your thoughts enough so you can take a step back and see the big picture....
You said the other day that "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"......I've already explained a lot about symptoms, clinical signs, lesion types, MS locations, Mcdonald, alternative medical explanations etc etc
You mentioned your first neurologist eventually dismissed you, referred you to a psych because he was of the opinion your symptoms were psychological or functional 'BUT' sorry i'm not sure if it was the no 2 professor or no 3 MS neuro, 'but' later your 2015 neuro after saying he wasn't convinced it was MS, explaining that you didn't meet the Mcdonald Criteria, he said he didn't have any further diagnostic evidence of neurologic disease.....he definitely didn't dismiss you, he actually kept looking for evidence of alternative causation and found it!
You've only mentioned the 1 spinal MRI in 2015, which found multi level disc issues and 2 areas of compression, you were referred to a surgeon and was going to have the surgery until it was cancelled because it wouldn't end up solving all your symptoms or issues, right?
"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. "
Whilst you've never mentioned what 'neurological clinical abnormality(s)' you had/have to put neurological conditions on your potential list, but you actually do have your neurological abnormal answer, peripheral nervous system -structural spinal damage ie 'Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7.'
You keep focusing on only your brain MRI's (2010-2016), continuing to explain every minute specific you can think of, but it still won't change what's most relevant to your situation, you don't have the minimum requirements to Mcdonald Criteria (DIS/DIT) and you do have more than one medical issue eg thyroid condition, migraines, that are commonly associated with non specific frontal lobe lesions...
Demyelination is just one of the differentials less common than any of the other more common ones you've mentioned stated in your reports, radiologists or neurologists....i've explained MS lesions prior, it honestly does no one any good to assume more meaning from a lists of alternatives, they're not diagnostically more meaningful than being a list of potential explanations (maybe this, maybe that etc).
MS is not exactly a diagnosis made by exclusion but close, your brain MRI's have not indicated MS would be the 'most likely' explanation, it can take years to find the right alternative condition or conditions, when there is more than 1 medical condition it can take even longer to work out exactly whats going on.
You have a few non specific lesions in your cerebral hemispheres, the right frontal lobe seems to be the one location consistently mentioned, no lesions in a location that could account for your physically disabling symptoms but multi level structural spinal issues and cord compression that more likely would.
No lesion(s) in the frontal lobe(s) could explain every symptom on your entire list of symptoms, most symptoms associated with MS are also associated with other medical conditions, when you've got multiple medical issues working out what symptom goes with what condition starts getting really confusing and often impossible to get right when condition symptoms overlap....
"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!"
Since i wrote that you've mentioned currently being vitamin B12 deficient and receiving injections, but other things i can find are migraines, multi level DDD and mulit level neurological compression, chronic fatigue type syndrome / Fibromyalgia, you had your thyroid removed a couple of years ago, and also endoscopic sinus surgery, there may be more but that's a heck of lot for anyone person to have to deal with!
You say "I don't know if this MS, or it's going to develop into MS, or something completely different", you've admitted you over analyse and you've wondered if your barking up the wrong tree but from my perspective trying to help, you don't seem to be thinking of any of those medical issues as being at all relevant to what your dealing with, MS seems to be the only explanation you can focus on despite everything else......it's a concern if you are, please try if you can to take a step back and get your mind to stop spinning about MS, please, please 'consider' seeing your psych again, nothing to do with causation, just to help you process all that's happened to you, your dealing with a lot of medical issues and seeing a psych can really help, anyone needs to have extra support when they are dealing with chronic medical issues!
Hope that helps........JJ
You said the other day that "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"......I've already explained a lot about symptoms, clinical signs, lesion types, MS locations, Mcdonald, alternative medical explanations etc etc
You mentioned your first neurologist eventually dismissed you, referred you to a psych because he was of the opinion your symptoms were psychological or functional 'BUT' sorry i'm not sure if it was the no 2 professor or no 3 MS neuro, 'but' later your 2015 neuro after saying he wasn't convinced it was MS, explaining that you didn't meet the Mcdonald Criteria, he said he didn't have any further diagnostic evidence of neurologic disease.....he definitely didn't dismiss you, he actually kept looking for evidence of alternative causation and found it!
You've only mentioned the 1 spinal MRI in 2015, which found multi level disc issues and 2 areas of compression, you were referred to a surgeon and was going to have the surgery until it was cancelled because it wouldn't end up solving all your symptoms or issues, right?
"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. "
Whilst you've never mentioned what 'neurological clinical abnormality(s)' you had/have to put neurological conditions on your potential list, but you actually do have your neurological abnormal answer, peripheral nervous system -structural spinal damage ie 'Multilevel degenerative disease, with neurological compression most pronounced on the left at C5-6 and on the right at C6-7.'
You keep focusing on only your brain MRI's (2010-2016), continuing to explain every minute specific you can think of, but it still won't change what's most relevant to your situation, you don't have the minimum requirements to Mcdonald Criteria (DIS/DIT) and you do have more than one medical issue eg thyroid condition, migraines, that are commonly associated with non specific frontal lobe lesions...
Demyelination is just one of the differentials less common than any of the other more common ones you've mentioned stated in your reports, radiologists or neurologists....i've explained MS lesions prior, it honestly does no one any good to assume more meaning from a lists of alternatives, they're not diagnostically more meaningful than being a list of potential explanations (maybe this, maybe that etc).
MS is not exactly a diagnosis made by exclusion but close, your brain MRI's have not indicated MS would be the 'most likely' explanation, it can take years to find the right alternative condition or conditions, when there is more than 1 medical condition it can take even longer to work out exactly whats going on.
You have a few non specific lesions in your cerebral hemispheres, the right frontal lobe seems to be the one location consistently mentioned, no lesions in a location that could account for your physically disabling symptoms but multi level structural spinal issues and cord compression that more likely would.
No lesion(s) in the frontal lobe(s) could explain every symptom on your entire list of symptoms, most symptoms associated with MS are also associated with other medical conditions, when you've got multiple medical issues working out what symptom goes with what condition starts getting really confusing and often impossible to get right when condition symptoms overlap....
"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!"
Since i wrote that you've mentioned currently being vitamin B12 deficient and receiving injections, but other things i can find are migraines, multi level DDD and mulit level neurological compression, chronic fatigue type syndrome / Fibromyalgia, you had your thyroid removed a couple of years ago, and also endoscopic sinus surgery, there may be more but that's a heck of lot for anyone person to have to deal with!
You say "I don't know if this MS, or it's going to develop into MS, or something completely different", you've admitted you over analyse and you've wondered if your barking up the wrong tree but from my perspective trying to help, you don't seem to be thinking of any of those medical issues as being at all relevant to what your dealing with, MS seems to be the only explanation you can focus on despite everything else......it's a concern if you are, please try if you can to take a step back and get your mind to stop spinning about MS, please, please 'consider' seeing your psych again, nothing to do with causation, just to help you process all that's happened to you, your dealing with a lot of medical issues and seeing a psych can really help, anyone needs to have extra support when they are dealing with chronic medical issues!
Hope that helps........JJ
What is your neurologist saying? I have not heard of size being a factor in MS lesions. Shape and location are much more important. If you do have MS you would most likely be pretty disabled at this point with that many lesions. It is not just lesions but disability. I only have three lesions and very little disability. I can still walk and ride horses. A lesions is a spot on the brain. A neurologist figures out what the spot means. An MRI does not actually show the lesions clearly. they are like shadow puppets. The lesions have to correlate with disability for a MS diagnosis. Do you have lesions on the ventricals that is classic MS? Or on the pons, the brain stem?
Alex
Alex
Hi supermum_ms,
Thanks for your thoughts.
One thing i have to make clear here is no other ruling in or out of any other diseases or medical conditions were spoken of for the cause of my symptoms other than MS.
MS was the only thing said to me by neuro no 1. He wanted to perform lumbar puncture to rule it in or out. He knew of all the medical conditions you spoke of. None of these were given as a cause for my symptoms.
He wasn't looking for anything else, he narrowed it down to one. MS. So to specifically refer to MS means he had to have evidence of it before asking for lumbar puncture. So I don't have MS because my lumbar puncture results were negative. Ruled out. If they were positive, Ruled in but no other cause was being investigated. So am i reading into what he said all wrong here?
Small vessel ischemia, Demyelination were given as a reason on brain Mri report 2014. In 2015 post traumatic, or ischemia is noted. 2016 by the same radiologist who compared 2015- 2016, post traumatic, ischemia or demyelination is written. So from September 2014 to March 2015, post traumatic is added, but not demyelination. Then in January 2016, Demyelination is again added. So make of that what you will.
I have in 2015 a measurement of 2-3mm. In 2016 a measurement of up to 3.5mm. But the same radiologist said no change in size or number since 2015. Is there a difference in measurements here?
Post traumatic why would that be mentioned? I didn't have an injury or blow to head. Does demyelination and post traumatic and ischemia all look similar?
My symptoms are feeling drunk all of the time, banging into things, clumsiness and all the others i spoke of in my other posts.
I just have to wait and see i guess.
Hugs
Marian.
Thanks for your thoughts.
One thing i have to make clear here is no other ruling in or out of any other diseases or medical conditions were spoken of for the cause of my symptoms other than MS.
MS was the only thing said to me by neuro no 1. He wanted to perform lumbar puncture to rule it in or out. He knew of all the medical conditions you spoke of. None of these were given as a cause for my symptoms.
He wasn't looking for anything else, he narrowed it down to one. MS. So to specifically refer to MS means he had to have evidence of it before asking for lumbar puncture. So I don't have MS because my lumbar puncture results were negative. Ruled out. If they were positive, Ruled in but no other cause was being investigated. So am i reading into what he said all wrong here?
Small vessel ischemia, Demyelination were given as a reason on brain Mri report 2014. In 2015 post traumatic, or ischemia is noted. 2016 by the same radiologist who compared 2015- 2016, post traumatic, ischemia or demyelination is written. So from September 2014 to March 2015, post traumatic is added, but not demyelination. Then in January 2016, Demyelination is again added. So make of that what you will.
I have in 2015 a measurement of 2-3mm. In 2016 a measurement of up to 3.5mm. But the same radiologist said no change in size or number since 2015. Is there a difference in measurements here?
Post traumatic why would that be mentioned? I didn't have an injury or blow to head. Does demyelination and post traumatic and ischemia all look similar?
My symptoms are feeling drunk all of the time, banging into things, clumsiness and all the others i spoke of in my other posts.
I just have to wait and see i guess.
Hugs
Marian.
COMMUNITY LEADER
I'm sorry you're not getting many opinions, the community is very very quiet this year...
Honestly, i think your hyper focusing on the only MRI report that mentions that 1 non specific right frontal lobe lesion that is 6.6mm because its different to all the others, and your expecting it to have more meaning than it can actually have towards the big picture.
Brain lesions do 'not' automatically mean MS, depending on the medical causation eg migraine, hypertension, thyroid conditions etc etc additional lesions are not abnormal over time, lesions come and lesions go etc Everything is indicating that particular sized lesion is definitely not growing, if anything your MRI's since 2014 have consistently indicated nothing larger than 3.5mm, so it's possibly shrunk, disappeared or it wasn't a lesion at all but it's definitely not growing.
You've had multiple brain MRI's from 2010-2016, many things can be mentioned in an MRI report but the neurologist determines it's significance based on the patient's symptoms, clinical exams, medical history, other test results, diagnosed conditions and the neuro's education and experience in the field of neurology.
Today, right now the collective weight of all your diagnostic evidence (2010-2016) is 'pointing away' from neurological conditions like MS, with or without that 6.6mm lesion you still do not meet the absolute minimum the Mcdonald criteria requires, and you do have alternative diagnosed medical conditions that could better account for your collective evidence, symptoms etc
The Mcdonald criteria was simplified until it is what is used today, MS is a complicated neurological condition to diagnose, it's not just the MRI evidence but the collection of consistent and or suggestive evidence that puts MS at the top of your list.
2010-2016 is typically more than sufficient time, you are more complicated than the average patient because you have multiple conditions but you just can't overlook those conditions as the more likely causation, frontal lobe lesions or a certain sized frontal lobe lesion could not cause all your different issues and forget about the basic of neurological conditions like MS.
I genuinely understand why you are confused by MS being a possible explanation and then all the neurologists you've seen say it's not MS because you don't meet the Mcdonald criteria.....you deserve better treatment options that incorporate all the conditions your dealing with because you say your progressing, please consider focusing you time and energy on understanding the conditions you know you have, it definitely can't hurt and it just might end up help you the most!
Hope i helped.....JJ
Honestly, i think your hyper focusing on the only MRI report that mentions that 1 non specific right frontal lobe lesion that is 6.6mm because its different to all the others, and your expecting it to have more meaning than it can actually have towards the big picture.
Brain lesions do 'not' automatically mean MS, depending on the medical causation eg migraine, hypertension, thyroid conditions etc etc additional lesions are not abnormal over time, lesions come and lesions go etc Everything is indicating that particular sized lesion is definitely not growing, if anything your MRI's since 2014 have consistently indicated nothing larger than 3.5mm, so it's possibly shrunk, disappeared or it wasn't a lesion at all but it's definitely not growing.
You've had multiple brain MRI's from 2010-2016, many things can be mentioned in an MRI report but the neurologist determines it's significance based on the patient's symptoms, clinical exams, medical history, other test results, diagnosed conditions and the neuro's education and experience in the field of neurology.
Today, right now the collective weight of all your diagnostic evidence (2010-2016) is 'pointing away' from neurological conditions like MS, with or without that 6.6mm lesion you still do not meet the absolute minimum the Mcdonald criteria requires, and you do have alternative diagnosed medical conditions that could better account for your collective evidence, symptoms etc
The Mcdonald criteria was simplified until it is what is used today, MS is a complicated neurological condition to diagnose, it's not just the MRI evidence but the collection of consistent and or suggestive evidence that puts MS at the top of your list.
2010-2016 is typically more than sufficient time, you are more complicated than the average patient because you have multiple conditions but you just can't overlook those conditions as the more likely causation, frontal lobe lesions or a certain sized frontal lobe lesion could not cause all your different issues and forget about the basic of neurological conditions like MS.
I genuinely understand why you are confused by MS being a possible explanation and then all the neurologists you've seen say it's not MS because you don't meet the Mcdonald criteria.....you deserve better treatment options that incorporate all the conditions your dealing with because you say your progressing, please consider focusing you time and energy on understanding the conditions you know you have, it definitely can't hurt and it just might end up help you the most!
Hope i helped.....JJ
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