Aa
Letter
Hi guy's, I've received neurologist No 1's letter. It's a very long letter so i will give you some of its content. The parts i believe that are important. These are his answers to my questions.
I have multiple small lesions in the white matter of the brain. These are scattered throughout the brain in the various lobes of the brain. These seem to spare the deeper parts of the brain and brainstem. The 6.6mm is in the white matter of the right frontal region of the brain. He cannot really be more specific than that.
The other lesions are essentially scattered in the white matter throughout the brain in predominantly the frontal and parietal lobes on both sides. No lesions in the temporal lobe or brainstem.
The remainder of the lesions are smaller than this lesion and in general they measure 1-3mm.
My symptoms visual, dizziness, and balance. These symptoms would neurologically refer to the brainstem and cerebellum, he does see how the small lesion in the corpus callosum would be a cause for my symptoms.
For the same reason above he does not think that the 6.6mm lesion is relevant to my symptoms.
My Mri 2010 showed 8/9 spots, so there was an increase from that to the scan 2014 which showed 18. It was because of this increase that he ordered lumbar puncture. These lesions however were not classical of demyelinating plaques as seen in MS. Smoking and high cholesterol could explain some of the increase in my case.
No the 6.6mm lesion was not present on the original MRI 2010, and appeared to develop after that. It is definitely present on the scan in 2014 and on subsequent scans. May i add here i did not give him my 2015/2016 scans. The number of lesions appears to have stabilized at that stage, and i don't see any further increase on the 2015 or 2016 scan, which is important, given that your symptoms have deteriorated over this time.
The number of lesions i have is not within normal limits for my age. In broad terms, people who have more of these lesions for age, fall into three categories. Patients who smoke, high blood pressure and high cholesterol. Patients with Migraine. Patients with neurological disorders such as multiple sclerosis.
I asked him a question regarding the two different measurements. The 6.6mm from 2014, and the 3.5mm from 2016. I just want to mention here that my brain Mri 2010, notes a 3mm focus also. His reply to my question regarding had i developed a new lesion, over the 6.6mm from what he can see, it's the same lesion in the right frontal region but that is the largest, he doesn't know why the radiologist in the other clinic said it was 3.5mm in 2016.
Because my scans are stable and my symptoms are worsening, this suggests they may not be directly connected. My vision and balance have never been right since 2014, and that's my main symptoms.
He goes on to discuss my questions regarding the McDonald Criteria. Lesions to be counted as new need to be in 2 out 4 particular areas. Therefore while the number of lesions does increase between 2010 and 2014 on my scans, he didn't mention my 2012, Mri which noted 5/6. Anyway he goes on to say, the fact that i didn't present with a clinically isolated syndrome, and because the subsequent lesions are not in any of the four areas, these criteria do not appear to apply to me. It should be noted that not meeting the McDonald Criteria does not exclude the diagnosis of MS and is often why we have to go on to do lumbar puncture and further follow up scans.
Because i didn't present with a clinically isolated syndrome, that is a typical attack with associated causative lesion, the 2010 Criteria does not strictly apply to me either. I have a lot of symptoms, that have not really had the typical onset and then recovery that we would see in a relapse of multiple sclerosis. In addition as he said earlier, he doesn't think any of the small Lesions on my brain scan could clearly account for any of my symptoms.
The exclusion of MS is based on clinical symptoms and signs in addition to Mri findings and CSF findings. In many cases making a diagnosis of MS is straightforward, but in some cases it is difficult to exclude it definitely. In his opinion based on clinical symptoms, Mri findings and CSF findings, it is unlikely that i have Multiple Sclerosis. As regards to my lumbar puncture, clearly if that had been positive it would have made MS a more likely diagnosis.
Given that a lot of my questions relate to the possibility of MS and given that this was the condition that he was concerned about when evaluating me, he thinks it would be reasonable to ask a neurologist specializing in MS for their opinion, and he will refer me. While all my questions were very reasonable, neurology is not straightforward and it can be difficult to give definitive answers.
Thanks for reading and any thoughts
Marian
I have multiple small lesions in the white matter of the brain. These are scattered throughout the brain in the various lobes of the brain. These seem to spare the deeper parts of the brain and brainstem. The 6.6mm is in the white matter of the right frontal region of the brain. He cannot really be more specific than that.
The other lesions are essentially scattered in the white matter throughout the brain in predominantly the frontal and parietal lobes on both sides. No lesions in the temporal lobe or brainstem.
The remainder of the lesions are smaller than this lesion and in general they measure 1-3mm.
My symptoms visual, dizziness, and balance. These symptoms would neurologically refer to the brainstem and cerebellum, he does see how the small lesion in the corpus callosum would be a cause for my symptoms.
For the same reason above he does not think that the 6.6mm lesion is relevant to my symptoms.
My Mri 2010 showed 8/9 spots, so there was an increase from that to the scan 2014 which showed 18. It was because of this increase that he ordered lumbar puncture. These lesions however were not classical of demyelinating plaques as seen in MS. Smoking and high cholesterol could explain some of the increase in my case.
No the 6.6mm lesion was not present on the original MRI 2010, and appeared to develop after that. It is definitely present on the scan in 2014 and on subsequent scans. May i add here i did not give him my 2015/2016 scans. The number of lesions appears to have stabilized at that stage, and i don't see any further increase on the 2015 or 2016 scan, which is important, given that your symptoms have deteriorated over this time.
The number of lesions i have is not within normal limits for my age. In broad terms, people who have more of these lesions for age, fall into three categories. Patients who smoke, high blood pressure and high cholesterol. Patients with Migraine. Patients with neurological disorders such as multiple sclerosis.
I asked him a question regarding the two different measurements. The 6.6mm from 2014, and the 3.5mm from 2016. I just want to mention here that my brain Mri 2010, notes a 3mm focus also. His reply to my question regarding had i developed a new lesion, over the 6.6mm from what he can see, it's the same lesion in the right frontal region but that is the largest, he doesn't know why the radiologist in the other clinic said it was 3.5mm in 2016.
Because my scans are stable and my symptoms are worsening, this suggests they may not be directly connected. My vision and balance have never been right since 2014, and that's my main symptoms.
He goes on to discuss my questions regarding the McDonald Criteria. Lesions to be counted as new need to be in 2 out 4 particular areas. Therefore while the number of lesions does increase between 2010 and 2014 on my scans, he didn't mention my 2012, Mri which noted 5/6. Anyway he goes on to say, the fact that i didn't present with a clinically isolated syndrome, and because the subsequent lesions are not in any of the four areas, these criteria do not appear to apply to me. It should be noted that not meeting the McDonald Criteria does not exclude the diagnosis of MS and is often why we have to go on to do lumbar puncture and further follow up scans.
Because i didn't present with a clinically isolated syndrome, that is a typical attack with associated causative lesion, the 2010 Criteria does not strictly apply to me either. I have a lot of symptoms, that have not really had the typical onset and then recovery that we would see in a relapse of multiple sclerosis. In addition as he said earlier, he doesn't think any of the small Lesions on my brain scan could clearly account for any of my symptoms.
The exclusion of MS is based on clinical symptoms and signs in addition to Mri findings and CSF findings. In many cases making a diagnosis of MS is straightforward, but in some cases it is difficult to exclude it definitely. In his opinion based on clinical symptoms, Mri findings and CSF findings, it is unlikely that i have Multiple Sclerosis. As regards to my lumbar puncture, clearly if that had been positive it would have made MS a more likely diagnosis.
Given that a lot of my questions relate to the possibility of MS and given that this was the condition that he was concerned about when evaluating me, he thinks it would be reasonable to ask a neurologist specializing in MS for their opinion, and he will refer me. While all my questions were very reasonable, neurology is not straightforward and it can be difficult to give definitive answers.
Thanks for reading and any thoughts
Marian
Oh and jj, are cognitive issues relevant in MS? I'm due to see a neuropsychologisit soon.
Give me a break, it's blatantly obvious this is MS.
Marian
Give me a break, it's blatantly obvious this is MS.
Marian
jj,
Firstly, it seems what i think is MS, is not MS, according to most of you guy's on this forum. Having read all of your thoughts, regarding my symptoms, my Mri's, it seems to me, correct me if I'm wrong that because i don't have typical symptoms, and i don't have, typical MS plaques, i don't have MS. Now if MS is not a typical disease, how is my theory wrong?
Does everyone who have MS have the same symptoms? Does everyone have spots in typical locations? Does everyone have positive lumbar puncture? Does your theory make sense to me? No it doesn't because you can't say when MS isn't a typical disease, that i don't have MS, or you can't say either that i didn't in 2014.
Correct me if I'm wrong. Is juxtacortical relevant or not in MS?
Is corpus callosum relevant or not in MS?
Are numerous lesions measuring 3mm, 3.5mm, and 6.6mm not relevant in MS?
Is location an absolute?
Are headaches relevant in MS?
Is double vision relevant in MS?
Is balance relevant in MS?
Is spacial awareness relevant in MS?
Is fatigue relevant in MS?
Is pain relevant in MS?
Is vitamin B12 relevant in MS?
Correct me if I'm wrong. Does everyone have to meet the McDonald Criteria for a diagnosis of MS?
Can some people meet some of the Criteria?
Can some people meet none of the Criteria?
Can some people meet all of the Criteria?
Correct me if I'm wrong.
Is hyperreflexia relevant in MS?
Is positive Rhombergs relevant in MS?
Is positive Hoffman's relevant in MS?
Are plantars that go up relevant in MS?
Are altered heel to toe movements relevant in MS?
Is sensation and touch relevant in MS?
Is drunkenness feeling relevant in MS?
Can you jj, give me your theory on what you would consider to be MS, possible MS, or No MS?
If like you say, like you said my theory is wrong, perhaps you can explain better just what is MS?
My theory is that i have MS, and because this neurologist didn't find a causative lesion, i don't meet the McDonald Criteria. Of course i have a causative lesion or lesions, juxtacortical, typical? Or not typical? Perhaps the corpus callosum lesion may or may not be typical? Perhaps the 6.6mm lesion is the one that is in a location typical for MS? Frontal Region, is not specific enough.
Typical, theories, whatever, I have more evidence to support MS, and this neurologist had this evidence, so if this isn't resolved at this meeting, it will legally be resolved.
Marian
Firstly, it seems what i think is MS, is not MS, according to most of you guy's on this forum. Having read all of your thoughts, regarding my symptoms, my Mri's, it seems to me, correct me if I'm wrong that because i don't have typical symptoms, and i don't have, typical MS plaques, i don't have MS. Now if MS is not a typical disease, how is my theory wrong?
Does everyone who have MS have the same symptoms? Does everyone have spots in typical locations? Does everyone have positive lumbar puncture? Does your theory make sense to me? No it doesn't because you can't say when MS isn't a typical disease, that i don't have MS, or you can't say either that i didn't in 2014.
Correct me if I'm wrong. Is juxtacortical relevant or not in MS?
Is corpus callosum relevant or not in MS?
Are numerous lesions measuring 3mm, 3.5mm, and 6.6mm not relevant in MS?
Is location an absolute?
Are headaches relevant in MS?
Is double vision relevant in MS?
Is balance relevant in MS?
Is spacial awareness relevant in MS?
Is fatigue relevant in MS?
Is pain relevant in MS?
Is vitamin B12 relevant in MS?
Correct me if I'm wrong. Does everyone have to meet the McDonald Criteria for a diagnosis of MS?
Can some people meet some of the Criteria?
Can some people meet none of the Criteria?
Can some people meet all of the Criteria?
Correct me if I'm wrong.
Is hyperreflexia relevant in MS?
Is positive Rhombergs relevant in MS?
Is positive Hoffman's relevant in MS?
Are plantars that go up relevant in MS?
Are altered heel to toe movements relevant in MS?
Is sensation and touch relevant in MS?
Is drunkenness feeling relevant in MS?
Can you jj, give me your theory on what you would consider to be MS, possible MS, or No MS?
If like you say, like you said my theory is wrong, perhaps you can explain better just what is MS?
My theory is that i have MS, and because this neurologist didn't find a causative lesion, i don't meet the McDonald Criteria. Of course i have a causative lesion or lesions, juxtacortical, typical? Or not typical? Perhaps the corpus callosum lesion may or may not be typical? Perhaps the 6.6mm lesion is the one that is in a location typical for MS? Frontal Region, is not specific enough.
Typical, theories, whatever, I have more evidence to support MS, and this neurologist had this evidence, so if this isn't resolved at this meeting, it will legally be resolved.
Marian
COMMUNITY LEADER
I don't think you even realise what your saying and completely believe to be true, is actually just your own lay persons opinion and to formulate your opinion, you are blatantly ignoring the inconvenient truth that you do not now nor have you ever had the diagnostic evidence to meet the Mcdonald diagnostic criteria for MS.
The more you keep saying the same info, the more convinced you get that what you believe is factually accurate but there are so many holes in your theory and nothing anyone says, no matter their qualifications will ever convince you that from 2012-2014-15-16 you still do NOT have the diagnostic evidence to be diagnosed with MS.
No one from what i have read has ever disputed that you have medical issues but you've asked questions about MS, described issues you have that you believe to be the same as MS issue and we've explained what happens when an issue is MS and when it's not and still, you don't seem to be able to let any information in if it's not what you believe MS to be.
Your reaction to neuro no 1's written response was predictable, those of us who have been trying to help you understand MS and have been following your journey, have been given the impression that what you really want is not to understand why you don't have the diagnostic evidence.....you want neuro no 1 to fall on his knees and beg your forgiveness, proof your theory is right that he should of diagnosed you with MS in 2014.....there is no cover up you can hide behind to give credibility to your theory but your not going to believe you've got it wrong because your so convince you've got it right..
If you genuinely believe you are at peace, you are kidding your self on what peace is suppose to feel like, you have declared war on neuro no 1's a$$ and you are out to get his head served to you on a platter. There is no peace in your words, your words are full of anger and frustration, you want someone to be responsible, you have neuro no 1 squarely in your sites.
Your pain over being dismissed as psychological is driving you and if he won't give you what you want, you are going to try to make him pay in anyway you feel is your right and nothing i or anyone says is going to give you something that makes you pause and reevaluate, you've had enough and you are going to go for it no matter the consequences your actions may bring to your door because you can't see the error of your way......and that is truly tragic and sad to me!
Good luck and well wishes........JJ
The more you keep saying the same info, the more convinced you get that what you believe is factually accurate but there are so many holes in your theory and nothing anyone says, no matter their qualifications will ever convince you that from 2012-2014-15-16 you still do NOT have the diagnostic evidence to be diagnosed with MS.
No one from what i have read has ever disputed that you have medical issues but you've asked questions about MS, described issues you have that you believe to be the same as MS issue and we've explained what happens when an issue is MS and when it's not and still, you don't seem to be able to let any information in if it's not what you believe MS to be.
Your reaction to neuro no 1's written response was predictable, those of us who have been trying to help you understand MS and have been following your journey, have been given the impression that what you really want is not to understand why you don't have the diagnostic evidence.....you want neuro no 1 to fall on his knees and beg your forgiveness, proof your theory is right that he should of diagnosed you with MS in 2014.....there is no cover up you can hide behind to give credibility to your theory but your not going to believe you've got it wrong because your so convince you've got it right..
If you genuinely believe you are at peace, you are kidding your self on what peace is suppose to feel like, you have declared war on neuro no 1's a$$ and you are out to get his head served to you on a platter. There is no peace in your words, your words are full of anger and frustration, you want someone to be responsible, you have neuro no 1 squarely in your sites.
Your pain over being dismissed as psychological is driving you and if he won't give you what you want, you are going to try to make him pay in anyway you feel is your right and nothing i or anyone says is going to give you something that makes you pause and reevaluate, you've had enough and you are going to go for it no matter the consequences your actions may bring to your door because you can't see the error of your way......and that is truly tragic and sad to me!
Good luck and well wishes........JJ
Hi aspen2,
Best Practice are the people at the hospital, who try to resolve a patient's concerns. I said that the Best Practice Manager will be present at the upcoming meeting, between myself and this neurologist.
Marian
Best Practice are the people at the hospital, who try to resolve a patient's concerns. I said that the Best Practice Manager will be present at the upcoming meeting, between myself and this neurologist.
Marian
Hi and very sorry to hear of your hardship. Thank you for your thoughts and i wish you well.
What goes around comes around, there's no truer saying. Eventually it does come around. I'm at peace because i know what i have.
Marian
What goes around comes around, there's no truer saying. Eventually it does come around. I'm at peace because i know what i have.
Marian
Hi aspen2,
I'm sorry you are having serious issues understanding my logic. These are the facts.
I presented with severe headaches and spatial awareness problems in January 2014, headaches that lasted most of the day every day, for a month before i got an appointment to see this neurologist.
He said the headaches were Migraine and prescribed topamax. From February 2014 - July 2014, I took topamax that he prescribed. The severe headaches were helped with topamax, but i still suffered headaches on and off as i still do, with dizziness.
September 2014, I presented to him with serious visual, balance and spacial awareness problems. I was admitted by him to hospital for tests for demyelination. So before any tests were carried out, he wrote testing for demyelination.
My brain Mri 2014, was ordered at his request for demyelination without contrast. I was told following that Mri, that i will undergo a lumbar puncture to rule in or out MS, because i had a few extra spots than on my previous Mri.
The lumbar puncture results came back, and i had an appointment to see him for the results. He said your lumbar puncture is negative, you definitely don't have MS. You could have a virus, so I will send you for some physio. I went for physio, and even the physiotherapist said my balance and spacial awareness was bad. I didn't benefit from the physio.
I asked for my hospital records. My brain Mri did note not just a few extra spots, but numerous. Largest measuring 6.6mm. I went to see three other neurologists, bringing this Mri along with me. They all avoided, either giving it for comparison to radiologists or not viewing it at all.
Neurological examinations. The neurologist I'm questioning never gave any detail in his letters to my GP on my neurological examinations he carried out. He just wrote, what i had told him my symptoms were. He did say, in one of his letters, that on neurological examination he couldn't find much except intermittent double vision.
The other two neurologists i saw gave their findings on my neurological examination. Neurologist no 2, found hyperreflexia in both upper and lower limbs with some spread to supernator jerks. He found positive Hoffman's bilaterally, he wasn't sure on if i was lifting my right leg or not properly. He cancelled spinal surgery, he advised Mri and clinical review on at least an annual basis.
Neurological no 3. He found my plantars went up, altered heel to toe movements and intermittent double vision.
Neurologist no 4. On his neurological examination he found nothing, and said the furthest he was prepared to go was chronic fatigue type syndrome/Fibromyalgia. He didn't want to view my brain Mri 2014.
The increase on my brain Mri 2014, did show an increase in spots total 18. Their measurements are 1-3mm largest 6.6mm. The smaller lesions are scattered in both frontal and parietal lobes on both sides. The largest is in the frontal region, and neurologist no 1, cannot be more specific than that on the 6.6mm one. These are all his explanations of size and location in recent letter.
2016 my Mri notes a white matter abnormality measuring up to 3.5mm. I gave neurologist no 1 the radiologists report. I asked him in my letter, about this measurement. Is it a new lesion, or is it the same lesion that has shrunk, or is a new lesion growing over the 6.6mm lesion. He wrote as far as he could see, it's the same lesion, and he doesn't know why the radiologist said it's 3.5mm.
So I'm confused by this, and ask if he had asked for a copy of my 2015, Mri from the other hospital. They said there is no record of anyone asking for that Mri. And i didn't give him a copy nor did he ask. So how can he say it's the same lesion if he hasn't viewed it?
How many lesions measure 3mm out of 18? The 6.6mm is the largest. Perhaps the evidence will prove that there was enough evidence for a diagnosis for MS, perhaps it will prove there wasn't. But either way, this neurologist no 1, didn't adequately follow-up on my symptoms, the changes on my brain Mri 2014. In his own words the increase stabilized in 2014. But what about the effects of what stabilized? Does he mean, everything is normal, your symptoms are nothing to do with the changes that are now stable. So don't bother me with, your lesions and your symptoms, they have no connection to each other. It's psychological, go away now and forget all about juxtacortical, lesions, increase and see the psychologist.
He made mistakes, he knows he did, and with respect aspen2 this is regarding my health, which he chose to mess around with, and having the evidence he did, that's negligence.
Of course my lesions are in the juxtacortical right frontal lobe, and enough of them there to cause damage. Strictly not juxtacortical is what he's saying now, there is no such thing as strictly juxtacortical. Juxtacortical is in or about the cortex. Neurologist no 4, who didn't want to look at this Mri, said that the lesions are tipping the juxtacortical, when he viewed my brain Mri 2014-2015. Neurologist no 2, when he did view the Mri 2014, wrote in his letter that the high signal multiple foci were in the juxtacortical right frontal lobe, and again he said it regarding my 2015, Mri.
So aspen2 I'm not as sure as everyone else is here that neurologist no 1, didn't have enough evidence to diagnose me with MS in 2014. I believe he did. Corpus callosum, juxtacortical are typical locations for MS. We know the location of the tiny corpus callosum lesion, we don't know the location of the biggest one, nor do we know how many out of 18 measuring 3mm and above are in the juxtacortical.
The facts and the evidence were not to be ignored like they were as too were my symptoms, by this neurologist. I'm appalled by his ease of dismissal of such evidence, psychological is not the correct diagnosis, MS is I believe the diagnosis he should have given. He had enough evidence, it's as simple as that.
Marian
I'm sorry you are having serious issues understanding my logic. These are the facts.
I presented with severe headaches and spatial awareness problems in January 2014, headaches that lasted most of the day every day, for a month before i got an appointment to see this neurologist.
He said the headaches were Migraine and prescribed topamax. From February 2014 - July 2014, I took topamax that he prescribed. The severe headaches were helped with topamax, but i still suffered headaches on and off as i still do, with dizziness.
September 2014, I presented to him with serious visual, balance and spacial awareness problems. I was admitted by him to hospital for tests for demyelination. So before any tests were carried out, he wrote testing for demyelination.
My brain Mri 2014, was ordered at his request for demyelination without contrast. I was told following that Mri, that i will undergo a lumbar puncture to rule in or out MS, because i had a few extra spots than on my previous Mri.
The lumbar puncture results came back, and i had an appointment to see him for the results. He said your lumbar puncture is negative, you definitely don't have MS. You could have a virus, so I will send you for some physio. I went for physio, and even the physiotherapist said my balance and spacial awareness was bad. I didn't benefit from the physio.
I asked for my hospital records. My brain Mri did note not just a few extra spots, but numerous. Largest measuring 6.6mm. I went to see three other neurologists, bringing this Mri along with me. They all avoided, either giving it for comparison to radiologists or not viewing it at all.
Neurological examinations. The neurologist I'm questioning never gave any detail in his letters to my GP on my neurological examinations he carried out. He just wrote, what i had told him my symptoms were. He did say, in one of his letters, that on neurological examination he couldn't find much except intermittent double vision.
The other two neurologists i saw gave their findings on my neurological examination. Neurologist no 2, found hyperreflexia in both upper and lower limbs with some spread to supernator jerks. He found positive Hoffman's bilaterally, he wasn't sure on if i was lifting my right leg or not properly. He cancelled spinal surgery, he advised Mri and clinical review on at least an annual basis.
Neurological no 3. He found my plantars went up, altered heel to toe movements and intermittent double vision.
Neurologist no 4. On his neurological examination he found nothing, and said the furthest he was prepared to go was chronic fatigue type syndrome/Fibromyalgia. He didn't want to view my brain Mri 2014.
The increase on my brain Mri 2014, did show an increase in spots total 18. Their measurements are 1-3mm largest 6.6mm. The smaller lesions are scattered in both frontal and parietal lobes on both sides. The largest is in the frontal region, and neurologist no 1, cannot be more specific than that on the 6.6mm one. These are all his explanations of size and location in recent letter.
2016 my Mri notes a white matter abnormality measuring up to 3.5mm. I gave neurologist no 1 the radiologists report. I asked him in my letter, about this measurement. Is it a new lesion, or is it the same lesion that has shrunk, or is a new lesion growing over the 6.6mm lesion. He wrote as far as he could see, it's the same lesion, and he doesn't know why the radiologist said it's 3.5mm.
So I'm confused by this, and ask if he had asked for a copy of my 2015, Mri from the other hospital. They said there is no record of anyone asking for that Mri. And i didn't give him a copy nor did he ask. So how can he say it's the same lesion if he hasn't viewed it?
How many lesions measure 3mm out of 18? The 6.6mm is the largest. Perhaps the evidence will prove that there was enough evidence for a diagnosis for MS, perhaps it will prove there wasn't. But either way, this neurologist no 1, didn't adequately follow-up on my symptoms, the changes on my brain Mri 2014. In his own words the increase stabilized in 2014. But what about the effects of what stabilized? Does he mean, everything is normal, your symptoms are nothing to do with the changes that are now stable. So don't bother me with, your lesions and your symptoms, they have no connection to each other. It's psychological, go away now and forget all about juxtacortical, lesions, increase and see the psychologist.
He made mistakes, he knows he did, and with respect aspen2 this is regarding my health, which he chose to mess around with, and having the evidence he did, that's negligence.
Of course my lesions are in the juxtacortical right frontal lobe, and enough of them there to cause damage. Strictly not juxtacortical is what he's saying now, there is no such thing as strictly juxtacortical. Juxtacortical is in or about the cortex. Neurologist no 4, who didn't want to look at this Mri, said that the lesions are tipping the juxtacortical, when he viewed my brain Mri 2014-2015. Neurologist no 2, when he did view the Mri 2014, wrote in his letter that the high signal multiple foci were in the juxtacortical right frontal lobe, and again he said it regarding my 2015, Mri.
So aspen2 I'm not as sure as everyone else is here that neurologist no 1, didn't have enough evidence to diagnose me with MS in 2014. I believe he did. Corpus callosum, juxtacortical are typical locations for MS. We know the location of the tiny corpus callosum lesion, we don't know the location of the biggest one, nor do we know how many out of 18 measuring 3mm and above are in the juxtacortical.
The facts and the evidence were not to be ignored like they were as too were my symptoms, by this neurologist. I'm appalled by his ease of dismissal of such evidence, psychological is not the correct diagnosis, MS is I believe the diagnosis he should have given. He had enough evidence, it's as simple as that.
Marian
You said: "My focus is on the facts and evidence not on opinions."
Your focus is NOT on the facts. It is on your (non-ms neurologist) interpretation of the facts you do have. Which is therefore, an opinion.
Fact: you don't meet McDonald critera. Lesions under 3 mm are never counted towards an ms diagnosis because they "could" be something else. Because of this, diagnostically, you have one lesion.
Fact: McDonald criteria is gold standard in getting an ms diagnosis.
Once again, I am not stating you do or don't have ms. But you certainly weren't diagnosable in 2014. The small lesions that increased? They don't count towards a diagnosis.
These are facts. Not being diagnosed quickly is for your PROTECTION. DMDs are not a picnic. They have significant and sometimes serious side effects. NO neurologist in his right mind will diagnose someone with MS without irrefutable evidence.
I read an article last year; something like 10% of ms diagnoses are MIS-diagnoses. Those people are suing ms neurologists because they have been given DMDs without cause.
IF it is ms, it will show eventually. If it is not, you will find out. Beating up your neurologist for following best practice in 2014? This is where we are having serious issues understanding your logic.
Your focus is NOT on the facts. It is on your (non-ms neurologist) interpretation of the facts you do have. Which is therefore, an opinion.
Fact: you don't meet McDonald critera. Lesions under 3 mm are never counted towards an ms diagnosis because they "could" be something else. Because of this, diagnostically, you have one lesion.
Fact: McDonald criteria is gold standard in getting an ms diagnosis.
Once again, I am not stating you do or don't have ms. But you certainly weren't diagnosable in 2014. The small lesions that increased? They don't count towards a diagnosis.
These are facts. Not being diagnosed quickly is for your PROTECTION. DMDs are not a picnic. They have significant and sometimes serious side effects. NO neurologist in his right mind will diagnose someone with MS without irrefutable evidence.
I read an article last year; something like 10% of ms diagnoses are MIS-diagnoses. Those people are suing ms neurologists because they have been given DMDs without cause.
IF it is ms, it will show eventually. If it is not, you will find out. Beating up your neurologist for following best practice in 2014? This is where we are having serious issues understanding your logic.
Hi Alex,
Unfortunately, If this neurologist misdiagnosed me, or was negligent then I'm not going to sit back and say, no problem thanks very much for your help. That's not how i want to deal with it this.
At the end of the day, it's one thing to give an opinion, as he did many, but when he had facts and evidence, that didn't match up with his opinion, then that's where i have the problem. Perhaps for some people, they would choose not to pursue this, but i have chosen to pursue this, because i don't agree with his opinions based on the evidence and the facts. I wouldn't pursue this if i thought there wasn't evidence in 2014, evidence which led to all other neurologists avoiding that evidence in some way. Whatever is on that Mri needs to be told to me, because it's upsetting me, and i don't think that's one bit fair.
In order to move on and enjoy life, i have to ask a neurologist why he blatantly avoided symptoms and evidence, and came to a conclusion that my symptoms are a cause of psychological distress. I believe that the evidence and facts will give me the answer, that should have been given by him in 2014. The facts and the evidence will decide solve this puzzle, not opinions.
I don't appreciate, misleading information, inadequate assessment, and blatant avoidance of evidence. That's crossing the line that never needed to have been crossed. What goes around comes around. I'm not angry with him, I'm appalled with his diagnosis, his handling of my symptoms, his whole handling of my health. It's not my problem how this is affecting him, it's his problem though how this is affecting me.
January to September 2014, there is evidence of 2 attacks on my central nervous system, there is evidence of an increase in lesions over double what was on my 2012, Mri, one of those lesions measuring 6.6, the rest measuring 1-3mm. New symptoms, New changes on my Mri 2014. So to say to anyone that these new symptoms and new changes, are due to a psychological disorder is quite frankly shameful. And I'm certainly pursuing my evidence, because he didn't. So it's him that needs to answer how he came to the conclusion he did, and how now he is saying things that he should have back in 2014.
I salute you as i said before, and you are an inspiration, having dealt with all that you have. But I'm not able to so easily walk away from a blatant attempt to avoid evidence.
All the best, you are in my thoughts.
Marian
Unfortunately, If this neurologist misdiagnosed me, or was negligent then I'm not going to sit back and say, no problem thanks very much for your help. That's not how i want to deal with it this.
At the end of the day, it's one thing to give an opinion, as he did many, but when he had facts and evidence, that didn't match up with his opinion, then that's where i have the problem. Perhaps for some people, they would choose not to pursue this, but i have chosen to pursue this, because i don't agree with his opinions based on the evidence and the facts. I wouldn't pursue this if i thought there wasn't evidence in 2014, evidence which led to all other neurologists avoiding that evidence in some way. Whatever is on that Mri needs to be told to me, because it's upsetting me, and i don't think that's one bit fair.
In order to move on and enjoy life, i have to ask a neurologist why he blatantly avoided symptoms and evidence, and came to a conclusion that my symptoms are a cause of psychological distress. I believe that the evidence and facts will give me the answer, that should have been given by him in 2014. The facts and the evidence will decide solve this puzzle, not opinions.
I don't appreciate, misleading information, inadequate assessment, and blatant avoidance of evidence. That's crossing the line that never needed to have been crossed. What goes around comes around. I'm not angry with him, I'm appalled with his diagnosis, his handling of my symptoms, his whole handling of my health. It's not my problem how this is affecting him, it's his problem though how this is affecting me.
January to September 2014, there is evidence of 2 attacks on my central nervous system, there is evidence of an increase in lesions over double what was on my 2012, Mri, one of those lesions measuring 6.6, the rest measuring 1-3mm. New symptoms, New changes on my Mri 2014. So to say to anyone that these new symptoms and new changes, are due to a psychological disorder is quite frankly shameful. And I'm certainly pursuing my evidence, because he didn't. So it's him that needs to answer how he came to the conclusion he did, and how now he is saying things that he should have back in 2014.
I salute you as i said before, and you are an inspiration, having dealt with all that you have. But I'm not able to so easily walk away from a blatant attempt to avoid evidence.
All the best, you are in my thoughts.
Marian
1 Comments
Life isn't fair and we all are victims of it! I was just on life support for two days with a tube down my throat, hooked up to six machines and two needles in my arms. There are no answers as to why I almost died.
Bottom line is everyone here has suffered horribly throughout the years and very rarely can we find out what happened when with this disease.
I was in horrible back pain for years before finding out I had lesions in my spine. I was so angry at my doc because I asked for a mri three times and once with dad. She did everything but and told me it was muscular.
I can hardly walk now and maybe I would be different if I received the medicine earlier.
I have let this go and one of the first people I saw when I came out of the coma was this doc sitting beside my bed.
Please work on finding your peace it will change your life.
Bottom line is everyone here has suffered horribly throughout the years and very rarely can we find out what happened when with this disease.
I was in horrible back pain for years before finding out I had lesions in my spine. I was so angry at my doc because I asked for a mri three times and once with dad. She did everything but and told me it was muscular.
I can hardly walk now and maybe I would be different if I received the medicine earlier.
I have let this go and one of the first people I saw when I came out of the coma was this doc sitting beside my bed.
Please work on finding your peace it will change your life.
Well thanks for your thoughts.
I like to get to the bottom of thing's, and that seems to be what's causing the back lash I'm receiving here. That's the type of person i am. If like you claim, that i have severe mental problems, and not MS then let's see if the evidence and facts prove either. How does that sound? Fair?
Marian
I like to get to the bottom of thing's, and that seems to be what's causing the back lash I'm receiving here. That's the type of person i am. If like you claim, that i have severe mental problems, and not MS then let's see if the evidence and facts prove either. How does that sound? Fair?
Marian
Hi jj,
Hope you enjoyed your weekend. Just wanted to let you know that i will be meeting neurologist no 1, in the presence of the Best Practice Manager from the hospital. I don't know yet when that will be, but it won't be too long.
I wasn't too sure when i suffered those awful headaches, so i asked when i was first prescribed Topamax. February 2014 is when. From February to July 2014, i was taking topamax. I had these since January 2014, because it took a couple of weeks to see Neurologist no 1.
Now in September 2014, I presented with vision, balance and spacial awareness problems., which are on going since then.
I will be discussing these headaches with him. The changes, the headaches, the visual, balance and spacial awareness will all be discussed. The lesions, and the fact that they are not classical demyelinating plaques like in MS, as he said in his letter. It was the increase that concerned him about the possibility of MS, and that is why i underwent lumbar puncture.
If on the other hand my lumbar puncture had been positive, the more likely diagnosis would have been MS, he wrote. So the fact that my spots were not classical demyelinating plaques, seen in MS, a positive lumbar puncture result would put MS as a more likely diagnosis.
So lumbar puncture results in my case were solely relied upon in reaching a decision for diagnosis of MS. But i thought neurologists also needed other evidence of MS, before they could tell someone based on lumbar puncture results alone that they did or didn't have MS.
This neurologist said, I had no clinical symptoms of MS and no classic demyelinating plaques, yet on the other hand, he said if the lumbar puncture was positive, the diagnosis of MS would have been more likely. So that means if i didn't have the clinical symptoms, and no classic plaques, he would have been happy based on lumbar puncture results if positive in giving a diagnosis of MS.
The 5% of people who don't have positive O Bands and have been diagnosed with MS, surely had other evidence when been given a diagnosis. I doubt any neurologist would diagnose MS based on a positive Lumbar puncture result alone.
He thinks an MS specialist is a reasonable option now, but in 2014, why didn't he think it a reasonable option then. He thought psychological distress was the cause of my symptoms, now there is no talk of psychological. He had evidence on my brain Mri 2014, and symptoms, prior symptoms in January 2014. It's his own fault no one else's that has led to this for him. I cannot be responsible for any of his mistakes. He's got to be responsible for them.
He didn't adequately follow-up on the headaches, my new symptoms following those headaches, the changes on my Mri. He wasn't competent in my case, and this has never about who has been right or wrong, it's to do with facts and evidence. I have a 6.6mm lesion, and 18 others measuring 1-3 mm. Then i have him saying the 3.5 is the 6.6, without viewing the 3 5mm MRI? I think he's uncaring and inadequate.
Marian
Hope you enjoyed your weekend. Just wanted to let you know that i will be meeting neurologist no 1, in the presence of the Best Practice Manager from the hospital. I don't know yet when that will be, but it won't be too long.
I wasn't too sure when i suffered those awful headaches, so i asked when i was first prescribed Topamax. February 2014 is when. From February to July 2014, i was taking topamax. I had these since January 2014, because it took a couple of weeks to see Neurologist no 1.
Now in September 2014, I presented with vision, balance and spacial awareness problems., which are on going since then.
I will be discussing these headaches with him. The changes, the headaches, the visual, balance and spacial awareness will all be discussed. The lesions, and the fact that they are not classical demyelinating plaques like in MS, as he said in his letter. It was the increase that concerned him about the possibility of MS, and that is why i underwent lumbar puncture.
If on the other hand my lumbar puncture had been positive, the more likely diagnosis would have been MS, he wrote. So the fact that my spots were not classical demyelinating plaques, seen in MS, a positive lumbar puncture result would put MS as a more likely diagnosis.
So lumbar puncture results in my case were solely relied upon in reaching a decision for diagnosis of MS. But i thought neurologists also needed other evidence of MS, before they could tell someone based on lumbar puncture results alone that they did or didn't have MS.
This neurologist said, I had no clinical symptoms of MS and no classic demyelinating plaques, yet on the other hand, he said if the lumbar puncture was positive, the diagnosis of MS would have been more likely. So that means if i didn't have the clinical symptoms, and no classic plaques, he would have been happy based on lumbar puncture results if positive in giving a diagnosis of MS.
The 5% of people who don't have positive O Bands and have been diagnosed with MS, surely had other evidence when been given a diagnosis. I doubt any neurologist would diagnose MS based on a positive Lumbar puncture result alone.
He thinks an MS specialist is a reasonable option now, but in 2014, why didn't he think it a reasonable option then. He thought psychological distress was the cause of my symptoms, now there is no talk of psychological. He had evidence on my brain Mri 2014, and symptoms, prior symptoms in January 2014. It's his own fault no one else's that has led to this for him. I cannot be responsible for any of his mistakes. He's got to be responsible for them.
He didn't adequately follow-up on the headaches, my new symptoms following those headaches, the changes on my Mri. He wasn't competent in my case, and this has never about who has been right or wrong, it's to do with facts and evidence. I have a 6.6mm lesion, and 18 others measuring 1-3 mm. Then i have him saying the 3.5 is the 6.6, without viewing the 3 5mm MRI? I think he's uncaring and inadequate.
Marian
COMMUNITY LEADER
The way your sentences read, "Can you figure out how a radiologist would measure a 6.6mm lesion, as 2/3mm and 3.5mm? + Neurologist no 1 doesn't know why, the radiologist said a lesion measuring 6.6mm is 3.5mm. He measured it at 2/3mm and up to 3.5mm. " .....looks like your saying the neuro stated the lesion in question was still 6.6mm in your later MRI's, even though it was reported as 2-3mm and 3.5mm and he doesn't know why it was sized incorrectly smaller.
If that is what you've understood, that would mean the prof of neurology, the MS specialising neuro and the last neuro plus the neuro radiologist who also reviewed your MRI's would of also missed a 6.6mm lesion measured incorrectly too, which seems unlikely....
Otherwise if your asking why the same lesion would be recorded as smaller in later MRI's, I have actually already explained lesions and MRI's in a few of your previous questions of the same subject but if you provide your actual question about the 6.6mm lesion and the exact quoted paragraphs that neuro 1 specifically replied with, we maybe able to give you more information or explain his response in relation to the actual question.
btw I've no intention of arguing with you the truth of MS or neurology in general, the long and short of it is, 'you' are of the opinion that you had the diagnostic evidence of a neurological condition like MS back in 2014 and neuro no 1 knew about the 6.6mm lesion but failed to diagnose you.....you need to keep in mind that you actually don't have the evidence to be diagnosed with MS, none of your other neurologist have been able to diagnose you with all your evidence either.
Obviously your free to disbelieve everything we've explained about MS but please do not make the mistake of assuming your opinion out weighs the collective knowledge and experience of 4 highly educated neurologists and a neuro-radiologist because they are not in agreement with you or giving you the diagnosis you expect, if anything it should make you at least question your ideas.
Hope that helps...JJ
ps its a long weekend over here and i may not be online for a few days
If that is what you've understood, that would mean the prof of neurology, the MS specialising neuro and the last neuro plus the neuro radiologist who also reviewed your MRI's would of also missed a 6.6mm lesion measured incorrectly too, which seems unlikely....
Otherwise if your asking why the same lesion would be recorded as smaller in later MRI's, I have actually already explained lesions and MRI's in a few of your previous questions of the same subject but if you provide your actual question about the 6.6mm lesion and the exact quoted paragraphs that neuro 1 specifically replied with, we maybe able to give you more information or explain his response in relation to the actual question.
btw I've no intention of arguing with you the truth of MS or neurology in general, the long and short of it is, 'you' are of the opinion that you had the diagnostic evidence of a neurological condition like MS back in 2014 and neuro no 1 knew about the 6.6mm lesion but failed to diagnose you.....you need to keep in mind that you actually don't have the evidence to be diagnosed with MS, none of your other neurologist have been able to diagnose you with all your evidence either.
Obviously your free to disbelieve everything we've explained about MS but please do not make the mistake of assuming your opinion out weighs the collective knowledge and experience of 4 highly educated neurologists and a neuro-radiologist because they are not in agreement with you or giving you the diagnosis you expect, if anything it should make you at least question your ideas.
Hope that helps...JJ
ps its a long weekend over here and i may not be online for a few days
2 Comments
Hi jj,
Indeed it is the Neurologist who said the lesion of 3.5mm is the 6.6mm lesion. Neurologist no 1 has said in his letter, it's 6.6mm on all scans. Even though he didn't have the one that says 3.5mm . Earlier i contacted the clinic who done my 2015/2016 MRI's, and asked them if neurologist no 1 asked them for a copy of those scans. No record they said of anyone asking for those scans.
So jj, I asked this neurologist in writing the following two questions regarding the 6.6mm lesion.
This is the first question I asked him. "Was the 6.6mm lesion present previous scans?"
His Answer. " No the 6.6mm lesion that you reference was not present on the original MRI in 2010 from what i can see and appeared to develop after that. It is definitely present on the scan in 2014 and on subsequent scans. The number of lesions appears to have stabilized at that stage and I don't see any further increase on the 2015 or 2016 scan which is important, given that your symptoms appear to have deteriorated over that time"
I did give him a copy of the radiologists 2016 Mri report not the scan. I asked him this question. " I have two measurements, 6.6mm and 3.5mm. Is the 3.5mm a new lesion or has the 6.6mm shrunk, is one growing over the other?"
His Answer. " From what i can see it's the same lesion. You do have a few smaller lesions in the right region but that is the largest. I don't know why the radiologist said it was 3.5mm."
Now from my reading of his words, how can he tell it's the same 6.6mm lesion if he didn't view the 2016 Mri? I didn't give him a copy of it, and he didn't ask the clinic for a copy of it.
No other doctor is going to admit another doctors negligence. I've rang the hospital and told them to get a copy of my 2015/2016 MRI's, give them to neurologist no 1, let him view them and then give me a couple of more written answers, regarding if the 3.5mm is the same as the 6.6mm and the location of the 6.6mm lesion i also want more clarification on.
I've always been told that no other doctor is going to admit the negligence of another, so perhaps this is why all other neurologists avoided this Mri in some way.
Enjoy your weekend.
Marian
Indeed it is the Neurologist who said the lesion of 3.5mm is the 6.6mm lesion. Neurologist no 1 has said in his letter, it's 6.6mm on all scans. Even though he didn't have the one that says 3.5mm . Earlier i contacted the clinic who done my 2015/2016 MRI's, and asked them if neurologist no 1 asked them for a copy of those scans. No record they said of anyone asking for those scans.
So jj, I asked this neurologist in writing the following two questions regarding the 6.6mm lesion.
This is the first question I asked him. "Was the 6.6mm lesion present previous scans?"
His Answer. " No the 6.6mm lesion that you reference was not present on the original MRI in 2010 from what i can see and appeared to develop after that. It is definitely present on the scan in 2014 and on subsequent scans. The number of lesions appears to have stabilized at that stage and I don't see any further increase on the 2015 or 2016 scan which is important, given that your symptoms appear to have deteriorated over that time"
I did give him a copy of the radiologists 2016 Mri report not the scan. I asked him this question. " I have two measurements, 6.6mm and 3.5mm. Is the 3.5mm a new lesion or has the 6.6mm shrunk, is one growing over the other?"
His Answer. " From what i can see it's the same lesion. You do have a few smaller lesions in the right region but that is the largest. I don't know why the radiologist said it was 3.5mm."
Now from my reading of his words, how can he tell it's the same 6.6mm lesion if he didn't view the 2016 Mri? I didn't give him a copy of it, and he didn't ask the clinic for a copy of it.
No other doctor is going to admit another doctors negligence. I've rang the hospital and told them to get a copy of my 2015/2016 MRI's, give them to neurologist no 1, let him view them and then give me a couple of more written answers, regarding if the 3.5mm is the same as the 6.6mm and the location of the 6.6mm lesion i also want more clarification on.
I've always been told that no other doctor is going to admit the negligence of another, so perhaps this is why all other neurologists avoided this Mri in some way.
Enjoy your weekend.
Marian
jj, I'm not questioning what i think, I'm questioning evidence and fact. No one wants what I've had to put up with from this neurologist. The truth will come out.
Marian
Marian
Also jj, facts and evidence far outweigh opinion. I have facts and evidence which will be very carefully looked at. My focus is on the facts and evidence not on opinions.
Marian
Marian
COMMUNITY LEADER
"This neurologist has made a complete mess of everything regarding my health, so I'm complaining about a disservice, I'm well within my rights to do so, and we will see if this is medical negligence.
He must think I'm stupid or something, well he's going to come down with a bang, if he hasn't already, I'm not the type of person who is fobbed off easily, I can smell a rat a mile away. I mean he must have thought i was a right idiot, I like to get to the bottom of thing's, that's the type of person i am. Do me wrong, and you'll never get away with it, I am determined to get to the root and i will. "
Your intent is to professionally attack your first neurologist for medical negligence.....not diagnosing you with something you believe it to be, when no other neurologist you've seen since has been able to work out whats wrong with you either, what happened to you is not 'medical negligence' on my side of the globe!
My mother had her bowel ruptured during a routine colonoscopy, her spleen was damaged somewhere along the line too, she flat lined and had emergency surgery to save her, she ended up on life support fighting for her life. Forever scar-ed, forever on medication, multiple surgeries to correct associated issues later and she is forever physically less than she was.....still not 'medical negligence' because it's a known risk. Yes it's frustratingly unfair that she had to deal with years of chronic pain and discomfort before the last issue was resolved and everything else that never will be but no ones to blame for what happened, no one did her wrong..
I don't know if you've lost the plot or not, but your focused on getting the specific answer you want from neuro 1, and you don't seem to have the hard evidence to back up your beliefs, being singularly focused or obsessed with a belief isn't good for anyone's mental health, so please be wary of falling down the slippery slope of mental health. It's not a bad thing to seek mental health support whilst in diagnostic limbo, your psych will help you find your peace and help you work through your thoughts, feelings etc so please don't discount the benefits of looking after your mental health too...
Best wishes for your future.....JJ
2 Comments
jj,
You didn't give me your thoughts on the 6.6mm lesion, and how you think a radiologist measured it 6.6mm twice as 2/3mm and up to 6.6mm.
This is what neurologist no 1 is saying in his letter. He is saying he doesn't know how the radiologist said it was 3.5mm when it's 6.6mm. He said in his letter he viewed 2015/2016 MRI's, and the lesion is still the same lesion of 6.6mm on those scans, as it is on the 2014 scan.
Medical negligence is my country is diagnosing someone with something that's not the cause of their symptoms. The 6.6mm lesion he knew of when he made this diagnosis. He didn't follow up on the changes on my brain Mri, we don't know if this lesion should have been further investigated.
As my bowel specialist has said, a biopsy might help tell us more. He is negligent because he didn't follow up on the changes on my Mri, he diagnosed psychological, and that he cannot do if there is evidence of a process which began and is stable since 2014.
He blatantly dismissed evidence, and diagnosed my symptoms as being psychological.
I am going to get to the root of why he ignored clinical evidence in my case.
I'm going to try and get a hold of the radiologist he says, measured a 6.6mm lesion twice incorrectly.
Marian
You didn't give me your thoughts on the 6.6mm lesion, and how you think a radiologist measured it 6.6mm twice as 2/3mm and up to 6.6mm.
This is what neurologist no 1 is saying in his letter. He is saying he doesn't know how the radiologist said it was 3.5mm when it's 6.6mm. He said in his letter he viewed 2015/2016 MRI's, and the lesion is still the same lesion of 6.6mm on those scans, as it is on the 2014 scan.
Medical negligence is my country is diagnosing someone with something that's not the cause of their symptoms. The 6.6mm lesion he knew of when he made this diagnosis. He didn't follow up on the changes on my brain Mri, we don't know if this lesion should have been further investigated.
As my bowel specialist has said, a biopsy might help tell us more. He is negligent because he didn't follow up on the changes on my Mri, he diagnosed psychological, and that he cannot do if there is evidence of a process which began and is stable since 2014.
He blatantly dismissed evidence, and diagnosed my symptoms as being psychological.
I am going to get to the root of why he ignored clinical evidence in my case.
I'm going to try and get a hold of the radiologist he says, measured a 6.6mm lesion twice incorrectly.
Marian
Sorry jj, correction. Neurologist no 1 doesn't know why, the radiologist said a lesion measuring 6.6mm is 3.5mm. He measured it at 2/3mm and up to 3.5mm.
So it's 6.6mm according to neurologist no 1, it's neither of the above measurements. Can you figure out how a radiologist would measure a 6.6mm lesion, as 2/3mm and 3.5mm?
So it's 6.6mm according to neurologist no 1, it's neither of the above measurements. Can you figure out how a radiologist would measure a 6.6mm lesion, as 2/3mm and 3.5mm?
Medicine is more art than science. It took me 46 years to be diagnosed with Multiple Sclerosis. They did not have MRIs in 1965 when I was first hospitalized. I went to the Mayo clinic in 1965 and all they could say was I had damaged to my brain stem. All my damage had been done. I go in once a year and the MS Specialist says nothing has changed. Once my GP thought I had MS it took two years to finally be diagnosed.The neurologists said I would be diagnosed in the future. Once you get diagnosed there are a lot of things you just have to live with. I have all the same issues I have always had. I thought I would be diagnosed and a team would go to fixing me. That really does not happen. I see the neurologist less. He did send me to a pain clinic.
There may not be any magic cures.
Alex
There may not be any magic cures.
Alex
1 Comments
Hi Alex,
I have accepted my symptoms, and know this is not going to go away. I will and continue to be strong.
It seems, i have lesions, but none of them are connected to my symptoms, according to neurologist no 1. Now if that's true, then I've lost the plot. These lesions didn't just appear same time as my symptoms, and they have nothing to do with them. That is ludicrous, because every neurologist i saw, after neurologist no 1, all avoided this Mri in some way. Now why would they do that? Because there was nothing on it, or because there was something on it.
I'm just sick of everyone confusing me regarding this Mri, the only person that can resolve this is neurologist no 1.
Thanks for your thoughts Alex, I'm feeling a bit sick, so i will go now and talk soon.
Marian
I have accepted my symptoms, and know this is not going to go away. I will and continue to be strong.
It seems, i have lesions, but none of them are connected to my symptoms, according to neurologist no 1. Now if that's true, then I've lost the plot. These lesions didn't just appear same time as my symptoms, and they have nothing to do with them. That is ludicrous, because every neurologist i saw, after neurologist no 1, all avoided this Mri in some way. Now why would they do that? Because there was nothing on it, or because there was something on it.
I'm just sick of everyone confusing me regarding this Mri, the only person that can resolve this is neurologist no 1.
Thanks for your thoughts Alex, I'm feeling a bit sick, so i will go now and talk soon.
Marian
COMMUNITY LEADER
I simply can't follow your logic, maybe someone else can understand where you get to where you do but to me your conclusions are based on assumptions, misinformation and or your interpretations but not on your actual diagnostic evidence, medical history or even all your symptoms....?
For your conclusion to have any merit;
Firstly, you would need to have diagnosed visual issues associated with frontal or Parietal Lobe lesions, which you don't.
Second, the 6.6mm lesion your focused on, would have to be in exactly the correct section of the lobe and you don't know more than it's in the 'right frontal lobe.
Third, all your MRI's from 2010-2016 and 2 different locations were run exactly the same eg MRI strength, protocol, software, slice size etc etc but the odds of the earlier MRI's showing less than the later ones and MRI's being run differently at different locations is a lot more likely
Fourth, any specific lesion mentioned must be the same lesion because 2014 largest was 6.6mm, 2015 was 2-3mm, 2016 was 3.5mm and the only thing you know is that for the last 2 years the non specific lesions previously seen in the same/similar location of the brain now range from 1mm to 3.5mm.
Fifth, all your symptoms that have no association with frontal lesions don;t count and ignore that you believe your symptoms have worsened over the same time frame that the lesions have not changed, apart from the possibility of the 6.6mm shrinking or disappearing, which is not worsening but improvement.
Sixth, ignore all your preexisting dx medical history even when both thyroid and migraines are associated with your diagnostic evidence, symptom pattern, symptoms etc etc
I could go on but i don't think you'll get where i'm coming from, just like i don't get how you can believe as strongly what you seem to with out the evidence to make sense of it....i wish you well and hope things work out for you!
Cheers.....JJ
For your conclusion to have any merit;
Firstly, you would need to have diagnosed visual issues associated with frontal or Parietal Lobe lesions, which you don't.
Second, the 6.6mm lesion your focused on, would have to be in exactly the correct section of the lobe and you don't know more than it's in the 'right frontal lobe.
Third, all your MRI's from 2010-2016 and 2 different locations were run exactly the same eg MRI strength, protocol, software, slice size etc etc but the odds of the earlier MRI's showing less than the later ones and MRI's being run differently at different locations is a lot more likely
Fourth, any specific lesion mentioned must be the same lesion because 2014 largest was 6.6mm, 2015 was 2-3mm, 2016 was 3.5mm and the only thing you know is that for the last 2 years the non specific lesions previously seen in the same/similar location of the brain now range from 1mm to 3.5mm.
Fifth, all your symptoms that have no association with frontal lesions don;t count and ignore that you believe your symptoms have worsened over the same time frame that the lesions have not changed, apart from the possibility of the 6.6mm shrinking or disappearing, which is not worsening but improvement.
Sixth, ignore all your preexisting dx medical history even when both thyroid and migraines are associated with your diagnostic evidence, symptom pattern, symptoms etc etc
I could go on but i don't think you'll get where i'm coming from, just like i don't get how you can believe as strongly what you seem to with out the evidence to make sense of it....i wish you well and hope things work out for you!
Cheers.....JJ
1 Comments
Hi jj,
Thanks for your thoughts.
Firstly neurologist no 1 has said in his letter that he viewed my subsequent scans meaning 2015/2016. He is saying based on viewing those scans, that the 3.5mm lesion is the 6.6mm lesion and he doesn't know why the radiologist said it is 3.5mm.
So what he is saying is that it's not 3.5mm it's 6.6mm, the same 6.6mm on 2014's Mri. So according to neurologist no 1, the radiologist who reported on my 2015/2016 MRI's, said the 6.6mm lesion, is 2/3mm in 2015, and up to 3.5mm in 2016. Neurologist no 1 says it's 6.6mm. Am I interrupting something wrong here in neurologist no 1's letter?
3.5mm is 6.6mm, the same lesion same size, in 2014, 2015, 2016. It's 6.6mm not 3.5mm, is what he is saying in his letter.
If it's the same lesion, as neurologist no 1 says, it means the radiologist measured it at 2-3mm in 2015, and up to 3.5mm in 2016. Perhaps jj, you can figure this out? Two measurements smaller than 6.6mm, and neurologist no 1, is saying it's 6.6mm on all three MRI's.
Neurologist no 2, the professor said that 2014 lesions are in the juxtacortical right frontal lobe. He said the same about the 2015, Mri, juxtacortical right frontal lobe.
Neurologist no 1, is saying the lesions are not strictly juxtacortical. Well we will be going to see neurologist no 1, to talk about what he means by strictly? We will be asking for more specific details regarding the 6.6mm lesion and it's location, frontal region isn't explanation enough. And we will be asking him to tell us why he diagnosed my symptoms as being psychological. If he can't tell us the location of the biggest lesion, but he can the smaller ones, we don't buy it. In fact we don't buy a lot of things he has said and done.
This neurologist has made a complete mess of everything regarding my health, so I'm complaining about a disservice, I'm well within my rights to do so, and we will see if this is medical negligence.
He must think I'm stupid or something, well he's going to come down with a bang, if he hasn't already, I'm not the type of person who is fobbed off easily, I can smell a rat a mile away. I mean he must have thought i was a right idiot, I like to get to the bottom of thing's, that's the type of person i am. Do me wrong, and you'll never get away with it, I am determined to get to the root and i will.
Marian
Thanks for your thoughts.
Firstly neurologist no 1 has said in his letter that he viewed my subsequent scans meaning 2015/2016. He is saying based on viewing those scans, that the 3.5mm lesion is the 6.6mm lesion and he doesn't know why the radiologist said it is 3.5mm.
So what he is saying is that it's not 3.5mm it's 6.6mm, the same 6.6mm on 2014's Mri. So according to neurologist no 1, the radiologist who reported on my 2015/2016 MRI's, said the 6.6mm lesion, is 2/3mm in 2015, and up to 3.5mm in 2016. Neurologist no 1 says it's 6.6mm. Am I interrupting something wrong here in neurologist no 1's letter?
3.5mm is 6.6mm, the same lesion same size, in 2014, 2015, 2016. It's 6.6mm not 3.5mm, is what he is saying in his letter.
If it's the same lesion, as neurologist no 1 says, it means the radiologist measured it at 2-3mm in 2015, and up to 3.5mm in 2016. Perhaps jj, you can figure this out? Two measurements smaller than 6.6mm, and neurologist no 1, is saying it's 6.6mm on all three MRI's.
Neurologist no 2, the professor said that 2014 lesions are in the juxtacortical right frontal lobe. He said the same about the 2015, Mri, juxtacortical right frontal lobe.
Neurologist no 1, is saying the lesions are not strictly juxtacortical. Well we will be going to see neurologist no 1, to talk about what he means by strictly? We will be asking for more specific details regarding the 6.6mm lesion and it's location, frontal region isn't explanation enough. And we will be asking him to tell us why he diagnosed my symptoms as being psychological. If he can't tell us the location of the biggest lesion, but he can the smaller ones, we don't buy it. In fact we don't buy a lot of things he has said and done.
This neurologist has made a complete mess of everything regarding my health, so I'm complaining about a disservice, I'm well within my rights to do so, and we will see if this is medical negligence.
He must think I'm stupid or something, well he's going to come down with a bang, if he hasn't already, I'm not the type of person who is fobbed off easily, I can smell a rat a mile away. I mean he must have thought i was a right idiot, I like to get to the bottom of thing's, that's the type of person i am. Do me wrong, and you'll never get away with it, I am determined to get to the root and i will.
Marian
Hi jj,
He couldn't be more specific than right frontal region for the 6.6mm lesion. What we don't understand about that is, all the other small lesions he say Frontal lobes, Parietal Lobes.
We need him to tell us why he cannot give a more specific explanation regarding the location of the 6.6mm lesion.
Parietal lobes are connected to Vision and Sensory pathways.
Strictly juxtacortical doesn't mean the lesions are not in and about the cortex, and not touching the cortex. Neurologist no 2 says the lesions are in the juxtacortical right frontal lobe. Neurologist no 4 said they are on the tip of the juxtacortical.
Neurologist no 1, says the lesions are not strictly juxtacortical. None of the lesions are connected to my symptoms he says in his letter. The neurologist in London said a process was happening.
We won't accept, anything less now then neurologist no 1 giving more of an explanation as to the location of this 6.6mm lesion.
Yes we believe that my symptoms are the cause of a lesion or lesions on my brain.
Marian
He couldn't be more specific than right frontal region for the 6.6mm lesion. What we don't understand about that is, all the other small lesions he say Frontal lobes, Parietal Lobes.
We need him to tell us why he cannot give a more specific explanation regarding the location of the 6.6mm lesion.
Parietal lobes are connected to Vision and Sensory pathways.
Strictly juxtacortical doesn't mean the lesions are not in and about the cortex, and not touching the cortex. Neurologist no 2 says the lesions are in the juxtacortical right frontal lobe. Neurologist no 4 said they are on the tip of the juxtacortical.
Neurologist no 1, says the lesions are not strictly juxtacortical. None of the lesions are connected to my symptoms he says in his letter. The neurologist in London said a process was happening.
We won't accept, anything less now then neurologist no 1 giving more of an explanation as to the location of this 6.6mm lesion.
Yes we believe that my symptoms are the cause of a lesion or lesions on my brain.
Marian
COMMUNITY LEADER
Are you not making assumptions and reading between the lines again to come up with...."It is something on my brain that has caused these symptoms. A process that has stabilized since 2014. But that process left me with serious consequences, those consequences being debilitating visual, balance and spatial awareness problems that are the result of the increase in spots. "
There is nothing you wrote as coming from neuro 1, that i can see that would support your belief that the location of the lesion(s) caused you to have debilitating visual and balance problems, and please correct me if i'm recalling incorrectly but didn't your visual tests results determined your visual issues were not neurological, so wouldn't assuming any specific one or even all of the non specific lesions in the location there in be assuming more than the evidence you actually have?
I gave you information about visual above, but i honestly don't think you are ready to take in anything that doesn't completely agree to your way of thinking, so i'll wish you luck on finding what your looking for...
Cheers....JJ
There is nothing you wrote as coming from neuro 1, that i can see that would support your belief that the location of the lesion(s) caused you to have debilitating visual and balance problems, and please correct me if i'm recalling incorrectly but didn't your visual tests results determined your visual issues were not neurological, so wouldn't assuming any specific one or even all of the non specific lesions in the location there in be assuming more than the evidence you actually have?
I gave you information about visual above, but i honestly don't think you are ready to take in anything that doesn't completely agree to your way of thinking, so i'll wish you luck on finding what your looking for...
Cheers....JJ
jj,
What I wrote in my post yesterday are neurologists no 1's answers. I've given them just as he has written them. So everything written is about me, but in his words.
What's weird is as my husband says, is he cannot be more specific about the 6.6mm lesion, other than right frontal region. Yet he can be specific about all the other small ones. Now I didn't give this neurologist a copy of my brain Mri scans of 2015/16. He referred in his letter that the 6.6mm lesion is the same lesion as the 2016 3.5mm lesion, and he doesn't know why the radiologist said it is 3.5mm.
Now this same radiologist said this lesion measured 2/3mm in 2015, up to 3.5mm in 2016. If neurologist no 1 is saying it's the same lesion as 6.6, then i don't know if he viewed these scans, just read the 2016 Mri report which i did give him.
It is something on my brain that has caused these symptoms. A process that has stabilized since 2014. But that process left me with serious consequences, those consequences being debilitating visual, balance and spatial awareness problems that are the result of the increase in spots.
No one can say with certainty what happened to me, no one can say with certainty what caused this to happen. But I know that he is the one who knew of these changes, and diagnosed my symptoms as being psychological.
The increase in spots, in both the frontal and parietal lobes. The 6.6mm lesion, and the 3.5mm lesion all play a part regarding my symptoms. Parietal lobes are also connected to visual and Sensory outputs/pathways.
He needs to explain further regarding the 6 6mm lesion where it is located. Myself and my husband are not going to accept that he doesn't know the location. I'm waiting for his reply to a meeting with me.
What i want this board to know, is i cannot say with certainty that i don't have MS, I cannot say with certainty what happened in my brain other than a process that has stabilized but that process left me with debilitating physical symptoms.
Of course, I'm concerned about this increase, who wouldn't be, what happened to me didn't happen and the changes didn't happen for nothing.
Marian
What I wrote in my post yesterday are neurologists no 1's answers. I've given them just as he has written them. So everything written is about me, but in his words.
What's weird is as my husband says, is he cannot be more specific about the 6.6mm lesion, other than right frontal region. Yet he can be specific about all the other small ones. Now I didn't give this neurologist a copy of my brain Mri scans of 2015/16. He referred in his letter that the 6.6mm lesion is the same lesion as the 2016 3.5mm lesion, and he doesn't know why the radiologist said it is 3.5mm.
Now this same radiologist said this lesion measured 2/3mm in 2015, up to 3.5mm in 2016. If neurologist no 1 is saying it's the same lesion as 6.6, then i don't know if he viewed these scans, just read the 2016 Mri report which i did give him.
It is something on my brain that has caused these symptoms. A process that has stabilized since 2014. But that process left me with serious consequences, those consequences being debilitating visual, balance and spatial awareness problems that are the result of the increase in spots.
No one can say with certainty what happened to me, no one can say with certainty what caused this to happen. But I know that he is the one who knew of these changes, and diagnosed my symptoms as being psychological.
The increase in spots, in both the frontal and parietal lobes. The 6.6mm lesion, and the 3.5mm lesion all play a part regarding my symptoms. Parietal lobes are also connected to visual and Sensory outputs/pathways.
He needs to explain further regarding the 6 6mm lesion where it is located. Myself and my husband are not going to accept that he doesn't know the location. I'm waiting for his reply to a meeting with me.
What i want this board to know, is i cannot say with certainty that i don't have MS, I cannot say with certainty what happened in my brain other than a process that has stabilized but that process left me with debilitating physical symptoms.
Of course, I'm concerned about this increase, who wouldn't be, what happened to me didn't happen and the changes didn't happen for nothing.
Marian
2 Comments
jj,
Neurologist no 1 is on annual leave, that's the latest from his office. On his return next week, he will be given my request to meet him.
There comes a time when enough is enough. That time has come. This neurologist knowingly had evidence on my brain Mri of a big increase in spots. He knew i had a 6.6mm lesion. Knowing what he knew, he diagnosed my symptoms as being psychological.
His written answers further prove that he knew what he knew. Now it's an MS specialist, not a psychologist he is offering to refer me to.
We've had enough. I'm doing the best that I can with my symptoms. I've accepted that they will not go away, I will be seeing an occupational therapist, a physiotherapist, I am getting on with it the best that I can. My husband is very supportive as too is my GP.
We are not falling for anymore from this neurologist.
Marian
Neurologist no 1 is on annual leave, that's the latest from his office. On his return next week, he will be given my request to meet him.
There comes a time when enough is enough. That time has come. This neurologist knowingly had evidence on my brain Mri of a big increase in spots. He knew i had a 6.6mm lesion. Knowing what he knew, he diagnosed my symptoms as being psychological.
His written answers further prove that he knew what he knew. Now it's an MS specialist, not a psychologist he is offering to refer me to.
We've had enough. I'm doing the best that I can with my symptoms. I've accepted that they will not go away, I will be seeing an occupational therapist, a physiotherapist, I am getting on with it the best that I can. My husband is very supportive as too is my GP.
We are not falling for anymore from this neurologist.
Marian
Hi jj
Neurologist no 1 is on annual leave. Next week he will be back and my request to meet him will be given to him ten.
I'm doing the best that i can with my symptoms, I will be assessed by an occupational therapist, and a physiotherapist. I've accepted that my symptoms are not going to go away. I'm doing the best i can.
My husband is very supportive as too is my GP. There comes a time when enough is enough. This neurologist made things very difficult for us.
His written answers further prove, he knew he had evidence of increase in spots. 6.6mm he knew of. Knowing what he did, he referred me to psychologist and said my symptoms were psychological, and that i didn't know my own mind.
Now he is offering to refer me to an MS specialist.
Enough said.
Marian
Neurologist no 1 is on annual leave. Next week he will be back and my request to meet him will be given to him ten.
I'm doing the best that i can with my symptoms, I will be assessed by an occupational therapist, and a physiotherapist. I've accepted that my symptoms are not going to go away. I'm doing the best i can.
My husband is very supportive as too is my GP. There comes a time when enough is enough. This neurologist made things very difficult for us.
His written answers further prove, he knew he had evidence of increase in spots. 6.6mm he knew of. Knowing what he did, he referred me to psychologist and said my symptoms were psychological, and that i didn't know my own mind.
Now he is offering to refer me to an MS specialist.
Enough said.
Marian
COMMUNITY LEADER
Weird, what you wrote is not written as expected when it's about someone else eg your, mss xyz, she/he etc it's written as expected when it's written about your self eg I didn't, my brain, he said etc
"Because i didn't present with a clinically isolated syndrome, that is a typical attack with associated causative lesion, the 2010 Criteria does not strictly apply to me either. I have a lot of symptoms, that have not really had the typical onset and then recovery that we would see in a relapse of multiple sclerosis. In addition as he said earlier, he doesn't think any of the small Lesions on my brain scan could clearly account for any of my symptoms. "
OK, so basically what your saying is that even though you were reassured talking to him over the phone, now you've got his written responses you're somehow back to focusing on those lesions causing the symptoms?
No one has ever discounted what you're saying you are physically dealing with, even when the results are not consistent with MS but it's hard to understand why you are focusing on a neurological diagnosis like MS and not focusing on finding solutions that changes and or improves your actual situation.
Take your visual issues for example, what you've described happening and stated was written on your visual assessments, aren't the same as the visual issues associated with neurological conditions like MS, and since you didn't get use to changing glasses and your visual situation hasn't improved as expected, your glasses scripts are not actually working well for you...seeing your ophthalmologist or optometrist about your alternatives, and making it clear what spacial awareness issues your dealing with and that you require a better solution than what you've so far been given..
The brain lesions are not in the right locations to be the cause of you falling over, i know you've had multiple neurological assessments and you've mentioned you saw an ENT but i can't recall you mentioning what your doctors have specifically noted was abnormal with your test results...did you have peripheral nerve signs?
It's just that if your convergence vision is off and causing perceptional/distance/spacial awareness issues and there isn't any other abnormality evident, you balance issues could be more to do with your visual issues and not brain or inner ear issues per say....
To explain; something as common as 'convergence insufficiency' can cause what's called suppression, which is a neurologically active process to deal with visual near and far issues but it is definitely known to cause frequent misjudgment of physical distances, trips and stumbles on uneven surfaces, stairs, curbs, spilling or knocking over objects, bumping into doors, furniture basically any stationary object, changes in posture like noticeably dropping one shoulder, tilting the head and it also can cause problems with motion sickness, dissiness and or vertigo.
You might find that focusing on finding a visual solution actually helps with the spacial and imbalance issues too....
Hope that helps......JJ
"Because i didn't present with a clinically isolated syndrome, that is a typical attack with associated causative lesion, the 2010 Criteria does not strictly apply to me either. I have a lot of symptoms, that have not really had the typical onset and then recovery that we would see in a relapse of multiple sclerosis. In addition as he said earlier, he doesn't think any of the small Lesions on my brain scan could clearly account for any of my symptoms. "
OK, so basically what your saying is that even though you were reassured talking to him over the phone, now you've got his written responses you're somehow back to focusing on those lesions causing the symptoms?
No one has ever discounted what you're saying you are physically dealing with, even when the results are not consistent with MS but it's hard to understand why you are focusing on a neurological diagnosis like MS and not focusing on finding solutions that changes and or improves your actual situation.
Take your visual issues for example, what you've described happening and stated was written on your visual assessments, aren't the same as the visual issues associated with neurological conditions like MS, and since you didn't get use to changing glasses and your visual situation hasn't improved as expected, your glasses scripts are not actually working well for you...seeing your ophthalmologist or optometrist about your alternatives, and making it clear what spacial awareness issues your dealing with and that you require a better solution than what you've so far been given..
The brain lesions are not in the right locations to be the cause of you falling over, i know you've had multiple neurological assessments and you've mentioned you saw an ENT but i can't recall you mentioning what your doctors have specifically noted was abnormal with your test results...did you have peripheral nerve signs?
It's just that if your convergence vision is off and causing perceptional/distance/spacial awareness issues and there isn't any other abnormality evident, you balance issues could be more to do with your visual issues and not brain or inner ear issues per say....
To explain; something as common as 'convergence insufficiency' can cause what's called suppression, which is a neurologically active process to deal with visual near and far issues but it is definitely known to cause frequent misjudgment of physical distances, trips and stumbles on uneven surfaces, stairs, curbs, spilling or knocking over objects, bumping into doors, furniture basically any stationary object, changes in posture like noticeably dropping one shoulder, tilting the head and it also can cause problems with motion sickness, dissiness and or vertigo.
You might find that focusing on finding a visual solution actually helps with the spacial and imbalance issues too....
Hope that helps......JJ
COMMUNITY LEADER
Sorry Marian but i actually found your update harder to follow than i expected it too, you seem to have written your interpretation of neuro 1's written responses to your specific questions, whilst intermingling your experiences, understandings and concerns anyway from the gist of it, it seems to me he has basically said the same things that we did....yes you have non specific brain lesions but the long and short of it is your MRI evidence hasn't ever met the Mcdonald criteria for MS.
The lesion location and all your other MS related diagnostic test evidence wouldn't put CIS or MS at the top of your causation list, the lesion location wouldn't account for the symptoms and or the symptom pattern you had and still have, so overall you didn't have the clinical and or diagnostic test evidence to suggest or was consistent with the causation being a neurological condition like MS...
I think it would be reasonable to assume, seeing another MS specialising neurologist, taking you to the 5th or 6th neurological opinion, with exactly the same unchanged MRI evidence, it will probably not gain you much more or anything different than what the previous neurologists have already explained to you.
Keep in mind that you are specifically focusing on the causation being MS, and whilst time is moving on, the continuation of unchanging or absent diagnostic evidence (suggestive/consistent with MS) would point away from MS being a likely explanation. Stable as in unchanged MRI's and or unchanged clinical neurological signs...
Hope that helps......JJ
The lesion location and all your other MS related diagnostic test evidence wouldn't put CIS or MS at the top of your causation list, the lesion location wouldn't account for the symptoms and or the symptom pattern you had and still have, so overall you didn't have the clinical and or diagnostic test evidence to suggest or was consistent with the causation being a neurological condition like MS...
I think it would be reasonable to assume, seeing another MS specialising neurologist, taking you to the 5th or 6th neurological opinion, with exactly the same unchanged MRI evidence, it will probably not gain you much more or anything different than what the previous neurologists have already explained to you.
Keep in mind that you are specifically focusing on the causation being MS, and whilst time is moving on, the continuation of unchanging or absent diagnostic evidence (suggestive/consistent with MS) would point away from MS being a likely explanation. Stable as in unchanged MRI's and or unchanged clinical neurological signs...
Hope that helps......JJ
2 Comments
Hi jj,
Thanks for your thoughts. No I didn't interpret to you guy's what he wrote. I wrote his exact answers.
What i posted is his exact answers. These are his answers not my interpretation. I am going to speak to him regarding prior symptoms to 2014, and my vision, balance and spatial awareness problems which began in 2014, and are the consequences of the changes i believe on my brain.
I will discuss prior headaches and spatial awareness problems prior to 2014, which he diagnosed as Migraine. He didn't do an Mri at that time. So the increase happened after 2012, because an Mri was done at another clinic, and that Mri noted 5/6 spots.
I have been left with the effects of these changes. The consequences are my vision, balance and spatial awareness damaged.
What stabilized in 2014 has left consequences and just because something is stable doesn't mean I haven't suffered the effects of what is now stable.
An MS specialist i will see once i speak first with this neurologist.
Marian
Thanks for your thoughts. No I didn't interpret to you guy's what he wrote. I wrote his exact answers.
What i posted is his exact answers. These are his answers not my interpretation. I am going to speak to him regarding prior symptoms to 2014, and my vision, balance and spatial awareness problems which began in 2014, and are the consequences of the changes i believe on my brain.
I will discuss prior headaches and spatial awareness problems prior to 2014, which he diagnosed as Migraine. He didn't do an Mri at that time. So the increase happened after 2012, because an Mri was done at another clinic, and that Mri noted 5/6 spots.
I have been left with the effects of these changes. The consequences are my vision, balance and spatial awareness damaged.
What stabilized in 2014 has left consequences and just because something is stable doesn't mean I haven't suffered the effects of what is now stable.
An MS specialist i will see once i speak first with this neurologist.
Marian
jj, I need to explain that an Mri was carried out at another clinic in 2012. It noted 5/6 spots, as too did my 2010. A 3mm focus was noted in 2010, 2015, 2016. 2014, notes a 6.6mm lesion. According to neurologist no 1 in his letter, this 3mm spoken of in 2016, is the same lesion as the 6.6mm and he doesn't know why that radiologist said it was 3.5mm. The same radiologist said it was 2-3mm in 2015.
Neurologist no 1 clearly said in his letter, that he viewed 2015/2016 scans. I didn't give him those scans. Perhaps he asked the other hospital for a copy of them. I did give him the radiologists reports only of these MRI's.
He said in his letter, based on those scans there has been no further increase in spots, and that the 3.5mm lesion is the same as the 6.6mm lesion, in the right frontal region, and he cannot be more specific than that on location.
So I need to know go and see him to discuss prior symptoms to 2014, the scan in 2012 done at another clinic, and why such an increase happened in such a short time. If i am correct this increase developed somewhere between my prior symptoms of headaches in 2012/2013, and my symptoms of visual and balance problems in 2014.
I'm not entirely sure if the 2012 scan was done before or after the headaches, it more than likely was before. I must find out if these headaches began in 2012/2013. But I'm certain this neurologist didn't do an Mri for long standing headaches and spatial awareness problems, that i presented with to him.
If i suffered the headaches in 2013, then the increase perhaps began then, and my headaches and spatial awareness problems were signs of something happening. So the increase may well have happened between 2013/2014.
I'm sorry for all this but it has been an absolute nightmare for me. The frustration with my vision, balance and spatial awareness is very difficult to come to terms with, and the stress of being told there is no cause for them is bringing on all sorts of other symptoms.
I hope you understand that falling around the place makes doing things very difficult. I'm struggling with my body in space, for nearly two years now. Please understand that this is very concerning for me and my family. I am sure the increase caused this.
Marian
Neurologist no 1 clearly said in his letter, that he viewed 2015/2016 scans. I didn't give him those scans. Perhaps he asked the other hospital for a copy of them. I did give him the radiologists reports only of these MRI's.
He said in his letter, based on those scans there has been no further increase in spots, and that the 3.5mm lesion is the same as the 6.6mm lesion, in the right frontal region, and he cannot be more specific than that on location.
So I need to know go and see him to discuss prior symptoms to 2014, the scan in 2012 done at another clinic, and why such an increase happened in such a short time. If i am correct this increase developed somewhere between my prior symptoms of headaches in 2012/2013, and my symptoms of visual and balance problems in 2014.
I'm not entirely sure if the 2012 scan was done before or after the headaches, it more than likely was before. I must find out if these headaches began in 2012/2013. But I'm certain this neurologist didn't do an Mri for long standing headaches and spatial awareness problems, that i presented with to him.
If i suffered the headaches in 2013, then the increase perhaps began then, and my headaches and spatial awareness problems were signs of something happening. So the increase may well have happened between 2013/2014.
I'm sorry for all this but it has been an absolute nightmare for me. The frustration with my vision, balance and spatial awareness is very difficult to come to terms with, and the stress of being told there is no cause for them is bringing on all sorts of other symptoms.
I hope you understand that falling around the place makes doing things very difficult. I'm struggling with my body in space, for nearly two years now. Please understand that this is very concerning for me and my family. I am sure the increase caused this.
Marian
Clearly the MS Specialist is the next stop.
Alex
Alex
1 Comments
Alex thanks for your thoughts. That's what I'm going to discuss with my GP. I need to go and see the MS specialist.
Marian
Marian
Can I just say as well that he said none of my new lesions are strictly in the juxtacortical. There are no particular peri ventricular or infratentorial lesions.
2010-2012, says pretty much the same about the number if spots. 2010 makes reference to something about 3mm. 2013, I suffered with severe headaches throughout the day and my spatial awareness on numerous occasions was very strange, in that i woke with these headaches and weird sensation of not being able to feel my body in space. He said these were migraine. He didn't do an Mri at that time.
So between 2013-2014 this increase happened, and in 2014 my vision and balance deteriorated. It has never been the same. This is a big increase in a year, and taking into account the new symptoms perhaps warning signs, that something was happening, this man is now saying these lesions are stable. What about the damage they have done?
He didn't act on the headaches in 2013, he didn't follow up on the changes he saw in 2014. He said my visual and balance problems were psychological. Having the evidence he had, he didn't adequately address the new lesions and my symptoms.
This may not be MS, but it sure as hell is not nothing either, and I'm going to find out just what is stable, and why my symptoms are there and never have they left since 2014.
Marian
2010-2012, says pretty much the same about the number if spots. 2010 makes reference to something about 3mm. 2013, I suffered with severe headaches throughout the day and my spatial awareness on numerous occasions was very strange, in that i woke with these headaches and weird sensation of not being able to feel my body in space. He said these were migraine. He didn't do an Mri at that time.
So between 2013-2014 this increase happened, and in 2014 my vision and balance deteriorated. It has never been the same. This is a big increase in a year, and taking into account the new symptoms perhaps warning signs, that something was happening, this man is now saying these lesions are stable. What about the damage they have done?
He didn't act on the headaches in 2013, he didn't follow up on the changes he saw in 2014. He said my visual and balance problems were psychological. Having the evidence he had, he didn't adequately address the new lesions and my symptoms.
This may not be MS, but it sure as hell is not nothing either, and I'm going to find out just what is stable, and why my symptoms are there and never have they left since 2014.
Marian
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