Aa
Buzzing Painful legs.
Hi again Guy's, I'm having a lot of trouble with my legs. They are extremely heavy. They feel like they are buzzing and especially my right shin gets a different sensation than my left. It's like i feel a numbness coming and going. This tightening really hurts. My ankles and knees especially get a piercing pain.
I have to rest them a lot to ease the discomfort, but any length of time standing, walking, kneeling. Just kills them. My legs are so uncomfortable. Is this a symptom one would experience in MS? My legs are getting worse since all this began. Pain, odd sensations. buzzing. The pain is so bad i hold onto things for support because of weakness.
I sweat profusely at night, i wake with numb fingers. I am really concerned. I'm due to have my vitamin B12 checked this week. My GP prescribed Cytagon tablets. I did also receive weekly injections for 6 weeks. My GP than said she wanted to try tablet form to see how they would work. I will yet again just talk to her about my symptoms like i have been now for two years.
I think this is MS. If it isn't than why haven't they found what it is, treated it instead of leaving me deteriorate? I cannot understand this, it's dumbfounding?
I'm waiting as you know for clarification on questions which i think if answered will shed light. I know you guy's think perhaps not, but something is causing my symptomsand I'm really concerned it's MS, even though everyone else thinks it's not.
Hugs
Marian
I have to rest them a lot to ease the discomfort, but any length of time standing, walking, kneeling. Just kills them. My legs are so uncomfortable. Is this a symptom one would experience in MS? My legs are getting worse since all this began. Pain, odd sensations. buzzing. The pain is so bad i hold onto things for support because of weakness.
I sweat profusely at night, i wake with numb fingers. I am really concerned. I'm due to have my vitamin B12 checked this week. My GP prescribed Cytagon tablets. I did also receive weekly injections for 6 weeks. My GP than said she wanted to try tablet form to see how they would work. I will yet again just talk to her about my symptoms like i have been now for two years.
I think this is MS. If it isn't than why haven't they found what it is, treated it instead of leaving me deteriorate? I cannot understand this, it's dumbfounding?
I'm waiting as you know for clarification on questions which i think if answered will shed light. I know you guy's think perhaps not, but something is causing my symptomsand I'm really concerned it's MS, even though everyone else thinks it's not.
Hugs
Marian
Hi again aspen2,
I just want you guy's all to know that I'm struggling with why when there is evidence of changes on my Mri 2014, and mention of Sylvain fissure, parietal lobe in my Mri 2010, how did this neurologist having both of these scans not see that there is evidence to suggest that this is not all in my mind, like he said. There is simply no way based on the evidence that he can say that these lesions, are not causing my symptoms.
Parietal frontal lobe, and Sylvain fissure, juxtacortical, corpus callosum are all area's where if lesions are located, can cause what I'm experiencing, and have been experiencing since 2010.
I have read that schizophrenia can have lesions in these area's. One thing is certain in all of this and that's something is very wrong, and if evidence is suggestive of something wrong, I should not have been treated the way i was by this neurologist, I'm sick of the way this neurologist gave vague and thoughtless attention to me and my symptoms over the year's.
Can any of you see where I'm coming from here? Something is causing my symptoms, i need an answer, because now I'm concerned about schizophrenia, I don't hear voices, I don't have visual hallucinations. I don't know enough about schizophrenia, to know.
I don't know what to think anymore. I'm trying to figure all this out myself and my symptoms are there and are real, why can't they tell me what is wrong?
Marian
I just want you guy's all to know that I'm struggling with why when there is evidence of changes on my Mri 2014, and mention of Sylvain fissure, parietal lobe in my Mri 2010, how did this neurologist having both of these scans not see that there is evidence to suggest that this is not all in my mind, like he said. There is simply no way based on the evidence that he can say that these lesions, are not causing my symptoms.
Parietal frontal lobe, and Sylvain fissure, juxtacortical, corpus callosum are all area's where if lesions are located, can cause what I'm experiencing, and have been experiencing since 2010.
I have read that schizophrenia can have lesions in these area's. One thing is certain in all of this and that's something is very wrong, and if evidence is suggestive of something wrong, I should not have been treated the way i was by this neurologist, I'm sick of the way this neurologist gave vague and thoughtless attention to me and my symptoms over the year's.
Can any of you see where I'm coming from here? Something is causing my symptoms, i need an answer, because now I'm concerned about schizophrenia, I don't hear voices, I don't have visual hallucinations. I don't know enough about schizophrenia, to know.
I don't know what to think anymore. I'm trying to figure all this out myself and my symptoms are there and are real, why can't they tell me what is wrong?
Marian
Hi aspen2,
Thanks for your thoughts. I have received much clarification and explanation, but not to my satisfaction.
This neurologist claims my double vision and balance issues, awkwardness and clumsiness are due to psychological issues. In 2010 there is evidence that 4 lesions are in the subcortical tissues of the parieto-frontal lobe bilaterally. I have been telling this neurologist for years that my eyes didn't feel right, drowsiness and pins and needles pain in my right eye.
Severe Headaches began in 2013, with no feeling of where my body was in space. This is when he should have done more, other than to prescribe topamax for migraine.
Parieto frontal lobe is relevant where my symptoms are concerned, visual spacial awareness, visual targeting and balance awkwardness, are my symptoms. If besides the four noted in 2010, and increase of more since then, are in that area, my worsening vision and balance problems are all in need of clarification for me. Sylvain fissure 3mm high signal also is probably the area all MRI's are speaking of over the year's.
If the location of the 6.6mm lesion is near the parietal frontal lobe, Sylvain fissure, it could be the answer to why I'm experiencing worsening visual, balance, spatial awareness.
I'm way off kilter. This neurologist I first met in 2010, he had this Mri, and had my 2012, 2014. There are changes that need to be clarified to me, location and connection to my symptoms in order for me to know, just in what context us stable and no progression being used.
It may not be MS, but it's something that needs further investigation.
Marian
Thanks for your thoughts. I have received much clarification and explanation, but not to my satisfaction.
This neurologist claims my double vision and balance issues, awkwardness and clumsiness are due to psychological issues. In 2010 there is evidence that 4 lesions are in the subcortical tissues of the parieto-frontal lobe bilaterally. I have been telling this neurologist for years that my eyes didn't feel right, drowsiness and pins and needles pain in my right eye.
Severe Headaches began in 2013, with no feeling of where my body was in space. This is when he should have done more, other than to prescribe topamax for migraine.
Parieto frontal lobe is relevant where my symptoms are concerned, visual spacial awareness, visual targeting and balance awkwardness, are my symptoms. If besides the four noted in 2010, and increase of more since then, are in that area, my worsening vision and balance problems are all in need of clarification for me. Sylvain fissure 3mm high signal also is probably the area all MRI's are speaking of over the year's.
If the location of the 6.6mm lesion is near the parietal frontal lobe, Sylvain fissure, it could be the answer to why I'm experiencing worsening visual, balance, spatial awareness.
I'm way off kilter. This neurologist I first met in 2010, he had this Mri, and had my 2012, 2014. There are changes that need to be clarified to me, location and connection to my symptoms in order for me to know, just in what context us stable and no progression being used.
It may not be MS, but it's something that needs further investigation.
Marian
Hi JJ,
My brain Mri 2014 has changes on it, and i presented with symptoms in 2014. Double Vision and balance problems.
I am listening to what all of you guy's have said, but i cannot so easily dismiss the findings on that Mri. We don't know the location of the 6.6mm lesion, we don't know the location of the 3.5mm lesion. Cerebral Hemispheres and right frontal lobe is only a broad term JJ. Juxtacortical has been mentioned. What if all the increased T2 hyperintensities are in the juxtacortical region? Would that be responsible for my double and blurring vision? Balance Problems.
The right and left hemispheres have T2 hyperintensities. The corpus callosum is another area noted. It too could cause symptoms. The radiologist who wrote my 2014 report, states numerous high signal foci more than expected for this age group. He and the Neurologist who ordered this Mri, both decided that lumbar puncture be carried out based on the findings on this Mri.
I have been attending this neurologist for six years. Pins and needles were my first symptoms, in 2010. That Mri said no demyelinating disease. In 2012, again looking for demyelination, my Mri said no Demyelinating Disease. In 2014 my report lists two causes, small vessel ischemia, demyelination.
In 2015, at the request of the professor an Mri with contrast is ordered, but no clinical question given or previous Mri for comparison is given to radiologist, and he writes that on his report. It's findings were a measurement of 2/3mm white matter abnormality in the right frontal lobe. Previous post traumatic or vascular is likely cause.
Same radiologist is asked by myself to compare my 2014 Brain Mri to my 2015. An addendum was to be given. I get a phone call from someone else at the clinic to tell me, that the radiologist said there will be no addendum, and that there is no change when he compared 2014- 2015.
2016 Same Radiologist reports on this Mri given with Contrast at the request of my GP.
Now confusion here again regarding my brain Mri 2014. There is no mention of it in his report, and maybe because the first time i gave it to them in 2015, they didn't download it, but i brought it along with me to the clinic as i did my 2015, and the technician said they had them on file.
It's not referred to in my 2016 report, I'm assuming it wasn't downloaded and i didn't want to ask this radiologist again for an addendum, he not giving it the first time.
His report notes small area of white matter abnormality measuring up to 3.5mm. No change in size or number since 2015. Post traumatic, vascular, demyelination. Stable and no progression.
So we have demyelination, small vessel ischemia in 2014, we have post traumatic, vascular in 2015, and in 2016 we have post traumatic, vascular or demyelination.
JJ, this is my 2010 Brain Mri report done at the same hospital as 2014.
Mri with contrast.
The brain was examined using sagittal and axial T1 and T2 weighted imaging sequences.
Pre and post contrast images were obtained. There is a small focus 3mm of high signal in the subcortical tissue just superior to the right Sylvain fissure. At least four smaller lesions are noted in the subcortical tissues of the parieto-frontal lob bilaterally, significance uncertain. The pattern is not characteristic of demyelination. Appearances could represent early microvasular change. No evidence of enhancement following gadolinium.
2014.
There are numerous tiny high signal foci in both cerebral hemispheres, approximately 13 on the right and 5/6 on the left, most numerous in the right frontal lobe, largest measuring 6.6mm.
I'm confused, by all of this. I'm only asking for clarification.
Marian
My brain Mri 2014 has changes on it, and i presented with symptoms in 2014. Double Vision and balance problems.
I am listening to what all of you guy's have said, but i cannot so easily dismiss the findings on that Mri. We don't know the location of the 6.6mm lesion, we don't know the location of the 3.5mm lesion. Cerebral Hemispheres and right frontal lobe is only a broad term JJ. Juxtacortical has been mentioned. What if all the increased T2 hyperintensities are in the juxtacortical region? Would that be responsible for my double and blurring vision? Balance Problems.
The right and left hemispheres have T2 hyperintensities. The corpus callosum is another area noted. It too could cause symptoms. The radiologist who wrote my 2014 report, states numerous high signal foci more than expected for this age group. He and the Neurologist who ordered this Mri, both decided that lumbar puncture be carried out based on the findings on this Mri.
I have been attending this neurologist for six years. Pins and needles were my first symptoms, in 2010. That Mri said no demyelinating disease. In 2012, again looking for demyelination, my Mri said no Demyelinating Disease. In 2014 my report lists two causes, small vessel ischemia, demyelination.
In 2015, at the request of the professor an Mri with contrast is ordered, but no clinical question given or previous Mri for comparison is given to radiologist, and he writes that on his report. It's findings were a measurement of 2/3mm white matter abnormality in the right frontal lobe. Previous post traumatic or vascular is likely cause.
Same radiologist is asked by myself to compare my 2014 Brain Mri to my 2015. An addendum was to be given. I get a phone call from someone else at the clinic to tell me, that the radiologist said there will be no addendum, and that there is no change when he compared 2014- 2015.
2016 Same Radiologist reports on this Mri given with Contrast at the request of my GP.
Now confusion here again regarding my brain Mri 2014. There is no mention of it in his report, and maybe because the first time i gave it to them in 2015, they didn't download it, but i brought it along with me to the clinic as i did my 2015, and the technician said they had them on file.
It's not referred to in my 2016 report, I'm assuming it wasn't downloaded and i didn't want to ask this radiologist again for an addendum, he not giving it the first time.
His report notes small area of white matter abnormality measuring up to 3.5mm. No change in size or number since 2015. Post traumatic, vascular, demyelination. Stable and no progression.
So we have demyelination, small vessel ischemia in 2014, we have post traumatic, vascular in 2015, and in 2016 we have post traumatic, vascular or demyelination.
JJ, this is my 2010 Brain Mri report done at the same hospital as 2014.
Mri with contrast.
The brain was examined using sagittal and axial T1 and T2 weighted imaging sequences.
Pre and post contrast images were obtained. There is a small focus 3mm of high signal in the subcortical tissue just superior to the right Sylvain fissure. At least four smaller lesions are noted in the subcortical tissues of the parieto-frontal lob bilaterally, significance uncertain. The pattern is not characteristic of demyelination. Appearances could represent early microvasular change. No evidence of enhancement following gadolinium.
2014.
There are numerous tiny high signal foci in both cerebral hemispheres, approximately 13 on the right and 5/6 on the left, most numerous in the right frontal lobe, largest measuring 6.6mm.
I'm confused, by all of this. I'm only asking for clarification.
Marian
1 Comments
You have received clarification ... Much clarification and explanation.
<br/>
<br/>Yes, it's confusing. But you are not hearing the explanations. You did say you would consider moving on to a new neuro or ms neuro and that seems like a good decision.
<br/>
<br/>Not much else any of us can do at this point ... Hopefully you can come to peace with your time in limbo. It IS dumbfounding, however you will have an answer at some point.
<br/>
<br/>I had a permanent disability by the time I was finally diagnosed ... It is upsetting and frustrating ... But the diagnostic process depends on certain elements that must be there ... Not for us, but for the diagnosing neurologist.
<br/>
<br/> Don't forget the link I sent you ... ☺️
<br/>
<br/>aspen
COMMUNITY LEADER
We have painstakingly explained many relevant MRI and MS factual details but you don't seem to acknowledge anything if it's not the way your thinking, there is a lot of collective history and MS understanding here that you are failing to take in. You are so focused on 1 of your MRI's that you believe shows evidence of MS, whilst failing to take in the consistency and totality of them all, your missing corroborating neurological abnormalities, diagnosed medical history etc etc.
2 weeks ago i wrote..
"Marian you're hyper focusing on the specifics that pertain to when the lesions are consistent with demyelination, enhancing lesions are obvious but there are many other identifying factors i explained prior eg dawson's fingers, oval shape, perpendicular to the long axis of the lateral ventricles, 3mm+ etc
"Diagnosis of MS requires elimination of more likely diagnoses and demonstration of dissemination of lesions in space and time"
You have multiple diagnosed medical conditions that combined more likely explain your symptoms, your clinical signs of neuro abnormality more likely explained by your abnormal spinal MRI and your multiple brain MRI's haven't the evidence to meet the Mcdonald criteria of time and space.
"Dissemination in space, demonstrated by >1T2 lesion in at least two MS typical CNS regions (periventricular, juxtacortical, infratorial, spinal cord);"
You don't meet the Mcdonald criteria because you've had multiple MRI's since 2011 and the only location been the frontal lobes (both cerebral hemispheres), and they have always been classed as nonspecific lesions because there hasn't been anything to identify them as demyelingating.
The only MRI (2014) that specifies a lesion number, which does add to 19, makes a point of stating they are 'tiny foci' with only one lesion identified as being larger than tiny ie 6.6mm.
Tiny Lesions are typically not counted, because they are typically ischemic micro vascular bleeds and being something like 500 times more common than MS lesions are. Your later 2016 brain MRI report, is more typical of how tiny lesions in the frontal lobes are mentioned in the report "Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter."
"Dissemination in time, demonstrated by Simultaneous asymptomatic contrast-enhancing and non-enhancing lesions at any time ; OR A new T2 and/or contrast-enhancing lesions(s) on follow-up MRI, irrespective of its timing;"
You haven't fulfilled 'DIS' from 2011-2016 and you won't of fulfilled 'DIT' 2015-2016 if the 2016 MRI when compared to 2015 (must be no less than 30days before) and your MRI's are "unchanged in size and number since February 2015. No larger white matter abnormality." in that time frame.
From what i understood of your neuro-radiologists review of your brain MRI's going back further, was that your MRI's have consistently indicated a few non specific bilateral frontal lobe lesions, 2014 MRI mentioning the 1 right frontal lobe lesion of 6.6mm with subsequent MRI's not finding any right frontal lobe lesions larger than 3.5mm.
You really need to keep in mind that frontal lobe lesions are honestly not associated with your extensive list of different symptoms but you do have diagnosed multiple medical conditions that are associated and together could account for most if not all.
Whilst i have no doubt that you have a lot of symptom progression since this started, your brain MRI's from 2011-2016 are more red flags pointing away from an MS causation......5 years is a long period of time for MS to a) not be more evident on any related tests b) still be in only one common frontal lobe location and no other, c) cause symptom progression with out corroborating progression eg MRI, clinical, other test
You said "roughly around 2012, 2013, I presented with morning headaches which were on going for months. I also experienced around this time a numbness all over my body upon awakening on several occasions it lasted mere seconds".....'all over' your body, numbness, tingling etc only lasted 'seconds', specific to a time or activity eg waking up, sitting etc is not something that is suggestive or consistent with a neurological condition like MS...."
You've had numerous neuro opinions and a neuro-radiologist explanations in regards to MS that you are also failing to take in, you have ENT, ophthalmologist etc etc and you are failing to take in anything that points away from MS as being in any way relevant.
Almost 3 weeks ago you wrote...
"Third neurologist i go and see is an MS specialist in London. I bring my 2014 Mri, and my 2015 Mri with me along with older scans. This neurologist made it very clear at the time that it would be important for a neuroradiologisit to view my images. I got a letter back from the Neurologist saying he had received back my Mri report from the neuroradiologisit and there has been no change on the brain since 2011. I assumed this included my 2014 Brain Mri. It was months later, when I asked for a copy of the neuroradiologisit report, that i found my 2014 Mri was not listed as being viewed.
I was taken aback by this, and got in contact with London. The neuroradiologisit agreed to view this Mri and My 2016 Mri free of charge. Her report came back, basically saying the paracheyma lesions were a common incidental finding on my 2014 Mri, and no change and are essentially stable for many years."
Only the 2014 radiologist report in 2014 specifically mentioned 1 'pin' size posterior CC, 1 frontal lobe foci of 6.6mm with anything else to add up to your 19 count was tiny foci of 2-3mm but you are failing to take in that you've had an independent review of all your MRI's and the 2014 MRI was found to be "common incidental findings" with your professor and MS neurologists explaining that you don't meet the Mcdonald criteria, so you have had explanation of this specific MRI and all the others in regards to MS.
It maybe not what you expected or enough to satisfy you but you still have a professional explanation of your 2014 MRI and you've still been asking if you have a black hole, 1, 2 or 19 lesions, a larger lesions growing over the top of the other etc etc etc and no matter how much is explained you don't seem to take any of in....I would strongly advice you to consider why.
Please consider taking a step back from thinking about MS for awhile.........JJ
2 weeks ago i wrote..
"Marian you're hyper focusing on the specifics that pertain to when the lesions are consistent with demyelination, enhancing lesions are obvious but there are many other identifying factors i explained prior eg dawson's fingers, oval shape, perpendicular to the long axis of the lateral ventricles, 3mm+ etc
"Diagnosis of MS requires elimination of more likely diagnoses and demonstration of dissemination of lesions in space and time"
You have multiple diagnosed medical conditions that combined more likely explain your symptoms, your clinical signs of neuro abnormality more likely explained by your abnormal spinal MRI and your multiple brain MRI's haven't the evidence to meet the Mcdonald criteria of time and space.
"Dissemination in space, demonstrated by >1T2 lesion in at least two MS typical CNS regions (periventricular, juxtacortical, infratorial, spinal cord);"
You don't meet the Mcdonald criteria because you've had multiple MRI's since 2011 and the only location been the frontal lobes (both cerebral hemispheres), and they have always been classed as nonspecific lesions because there hasn't been anything to identify them as demyelingating.
The only MRI (2014) that specifies a lesion number, which does add to 19, makes a point of stating they are 'tiny foci' with only one lesion identified as being larger than tiny ie 6.6mm.
Tiny Lesions are typically not counted, because they are typically ischemic micro vascular bleeds and being something like 500 times more common than MS lesions are. Your later 2016 brain MRI report, is more typical of how tiny lesions in the frontal lobes are mentioned in the report "Small area's of abnormal high signal intensity in the frontal white matter on the right measuring up to 3.5 mm in diameter."
"Dissemination in time, demonstrated by Simultaneous asymptomatic contrast-enhancing and non-enhancing lesions at any time ; OR A new T2 and/or contrast-enhancing lesions(s) on follow-up MRI, irrespective of its timing;"
You haven't fulfilled 'DIS' from 2011-2016 and you won't of fulfilled 'DIT' 2015-2016 if the 2016 MRI when compared to 2015 (must be no less than 30days before) and your MRI's are "unchanged in size and number since February 2015. No larger white matter abnormality." in that time frame.
From what i understood of your neuro-radiologists review of your brain MRI's going back further, was that your MRI's have consistently indicated a few non specific bilateral frontal lobe lesions, 2014 MRI mentioning the 1 right frontal lobe lesion of 6.6mm with subsequent MRI's not finding any right frontal lobe lesions larger than 3.5mm.
You really need to keep in mind that frontal lobe lesions are honestly not associated with your extensive list of different symptoms but you do have diagnosed multiple medical conditions that are associated and together could account for most if not all.
Whilst i have no doubt that you have a lot of symptom progression since this started, your brain MRI's from 2011-2016 are more red flags pointing away from an MS causation......5 years is a long period of time for MS to a) not be more evident on any related tests b) still be in only one common frontal lobe location and no other, c) cause symptom progression with out corroborating progression eg MRI, clinical, other test
You said "roughly around 2012, 2013, I presented with morning headaches which were on going for months. I also experienced around this time a numbness all over my body upon awakening on several occasions it lasted mere seconds".....'all over' your body, numbness, tingling etc only lasted 'seconds', specific to a time or activity eg waking up, sitting etc is not something that is suggestive or consistent with a neurological condition like MS...."
You've had numerous neuro opinions and a neuro-radiologist explanations in regards to MS that you are also failing to take in, you have ENT, ophthalmologist etc etc and you are failing to take in anything that points away from MS as being in any way relevant.
Almost 3 weeks ago you wrote...
"Third neurologist i go and see is an MS specialist in London. I bring my 2014 Mri, and my 2015 Mri with me along with older scans. This neurologist made it very clear at the time that it would be important for a neuroradiologisit to view my images. I got a letter back from the Neurologist saying he had received back my Mri report from the neuroradiologisit and there has been no change on the brain since 2011. I assumed this included my 2014 Brain Mri. It was months later, when I asked for a copy of the neuroradiologisit report, that i found my 2014 Mri was not listed as being viewed.
I was taken aback by this, and got in contact with London. The neuroradiologisit agreed to view this Mri and My 2016 Mri free of charge. Her report came back, basically saying the paracheyma lesions were a common incidental finding on my 2014 Mri, and no change and are essentially stable for many years."
Only the 2014 radiologist report in 2014 specifically mentioned 1 'pin' size posterior CC, 1 frontal lobe foci of 6.6mm with anything else to add up to your 19 count was tiny foci of 2-3mm but you are failing to take in that you've had an independent review of all your MRI's and the 2014 MRI was found to be "common incidental findings" with your professor and MS neurologists explaining that you don't meet the Mcdonald criteria, so you have had explanation of this specific MRI and all the others in regards to MS.
It maybe not what you expected or enough to satisfy you but you still have a professional explanation of your 2014 MRI and you've still been asking if you have a black hole, 1, 2 or 19 lesions, a larger lesions growing over the top of the other etc etc etc and no matter how much is explained you don't seem to take any of in....I would strongly advice you to consider why.
Please consider taking a step back from thinking about MS for awhile.........JJ
I am dying of cancer. My doctors missed the cancer for years. Medicine is more art than science. It took them 44 years to diagnose my MS. I had my first documented attack in 1965. Then when they diagnosed the MS they thought everything wrong with me was MS. I do not blame my doctor. One did screw up but she did something rare she apologized. I have probably saved another patient's life. My first Oncologist was a great surgeon after surgery I never saw him again. He was going to wait six months. I was dying at two months. I switched hospitals. They immediately hospitalized me. I sent the new doctors report to the old hospital. The new doctor was best friends with the guy at the old hospital. They cover each other's butts. I simply switched doctors again and moved on. It all turned out okay. I only have months to live but I am happy. I do not worry about the medical. I have months to live. I am not wasting them thinking about any of it.
Alex
Alex
2 Comments
Hi HVAC,
I am sorry to hear what you've shared.
I will keep you in my thoughts.
Marian
I am sorry to hear what you've shared.
I will keep you in my thoughts.
Marian
HVAC, as one who has MS, with the surprise of cancer found during my ms work up, your posts continue to inspire me. You were one of the first people I thought of when my cystoscope showed the unexpected.
Thank you that you continue to contribute -- a life you are living well <3.
Thank you that you continue to contribute -- a life you are living well <3.
Well, neurologists can "make a fool" out of someone. They do treat patients badly, and they are not obligated to dx with anything when there is not enough proof. Mine lied outright to me -- told me "Congratulations, you don't have ms" when in fact he meant, "It's not LIKELY ms." They generally don't "learn lessons" from patients, in particular not ones they haven't been following. Questioning authority, although it may seem like a noble task, doesn't work here.
And ... Marian .. he based his decision on fact. You did not meet criteria at that point with your lesions. Perhaps because it's not ms. Perhaps because you just don't meet criteria. Those letters after your neuros name actually DO mean something. We absolutely can't figure out, from the internet, what these guys spend decades learning.
Ess is spot on. Find a new neuro, start from the beginning. You are trying to vindicate your position with the old neuro. Neurologists don't play that game. You are wasting valuable energy on what will end up being a pointless exercise. You have to understand that. You have other things more requiring of your energy.
Those of us in limbo are very tempted to try to prove a diagnosis, because unknowns are awful and crazy-making. I've been there. It is quite futile -- you need a relationship with a neuro, you need to be followed. You need to let go of trying to prove this guy wrong.
In limbo land, the only way to question authority is to change neurologists. You said, "If a diagnosis is to be given, it will be given based on the evidence and the facts." Exactly. But it won't be done retrospectively.
Wishing you the very best as you move forward!!!
And ... Marian .. he based his decision on fact. You did not meet criteria at that point with your lesions. Perhaps because it's not ms. Perhaps because you just don't meet criteria. Those letters after your neuros name actually DO mean something. We absolutely can't figure out, from the internet, what these guys spend decades learning.
Ess is spot on. Find a new neuro, start from the beginning. You are trying to vindicate your position with the old neuro. Neurologists don't play that game. You are wasting valuable energy on what will end up being a pointless exercise. You have to understand that. You have other things more requiring of your energy.
Those of us in limbo are very tempted to try to prove a diagnosis, because unknowns are awful and crazy-making. I've been there. It is quite futile -- you need a relationship with a neuro, you need to be followed. You need to let go of trying to prove this guy wrong.
In limbo land, the only way to question authority is to change neurologists. You said, "If a diagnosis is to be given, it will be given based on the evidence and the facts." Exactly. But it won't be done retrospectively.
Wishing you the very best as you move forward!!!
1 Comments
Hi aspen2,
I didn't learn anything from the internet, except i did read the McDonald Criteria.
My Mri reports, not the internet have noted spots, measurements, increase, broad term locations.
I have sent questions regarding all of the above to neurologist no 1. Why? Because i believe what has been noted on my Mri 2014 needs more clarification for me regarding the above.
My Mri 2014, noted a lot, and both himself and the radiologist at the time decided together to do lumbar puncture based on it's findings.
I have asked clinical questions nothing else. A new 6.6mm lesion, A new corpus callosum lesion, numerous others and no clarification on any of it. If I've in some way done wrong here by asking these questions, can someone tell me why?
My symptoms of double vision and balance problems began in 2014. I simply want to know what was noted on that Mri and the conversation following it clarified to me better than it has been.
There's no harm done by asking these questions. It would very importantly clear up my confusion in particular to this MRI. Because it does new changes when compared to all other MRI's.
I'm not looking to wrong anyone here. I'm not looking for revenge or plotting anything against this neurologist.
It's one of two things, the evidence on my brain Mri 2014 is of no concern and its a common finding and has nothing to do with my symptoms. Or the evidence is pointing to MS and to be told it is psychological when evidence suggests otherwise.
At the end of the day, this Mri is the one that notes changes, but yet to get clarification on it is like getting blood out of a turnip. And when a person has tried to personally sit with this guy to ask questions based on his tests, and being declined, i feel this in itself wasn't the right way he went about this.
People on the forum think I've gone the wrong way by sending in my written questions to him. I don't agree. This is about my health, my life, and if that Mri shows anything, it shows everyone I've dealt with regarding this Mri, have all avoided it.
I can't go looking any longer for neurologists having experienced this avoidance of this Mri. I want the Neurologist who ordered it to once and for all clarify it findings and my symptoms that i presented with in 2014.
If I'm wrong, I'm wrong and i will eat my words, it's because of the lack of clarification and avoidance of this Mri that has led to this. I cannot afford to go to another neurologist to have this Mri again pushed to the side.
It needs to be clarified by him in order for me to move on.
Three further neurologists avoided this Mri in some way. What does that tell you?
It doesn't sit right with me, and this hasn't helped my symptoms one bit. It's not acceptable for me.
If avoidance of this Mri is not telling in itself, then can anyone please tell me why no one wants to clarify it's findings.
Marian
I didn't learn anything from the internet, except i did read the McDonald Criteria.
My Mri reports, not the internet have noted spots, measurements, increase, broad term locations.
I have sent questions regarding all of the above to neurologist no 1. Why? Because i believe what has been noted on my Mri 2014 needs more clarification for me regarding the above.
My Mri 2014, noted a lot, and both himself and the radiologist at the time decided together to do lumbar puncture based on it's findings.
I have asked clinical questions nothing else. A new 6.6mm lesion, A new corpus callosum lesion, numerous others and no clarification on any of it. If I've in some way done wrong here by asking these questions, can someone tell me why?
My symptoms of double vision and balance problems began in 2014. I simply want to know what was noted on that Mri and the conversation following it clarified to me better than it has been.
There's no harm done by asking these questions. It would very importantly clear up my confusion in particular to this MRI. Because it does new changes when compared to all other MRI's.
I'm not looking to wrong anyone here. I'm not looking for revenge or plotting anything against this neurologist.
It's one of two things, the evidence on my brain Mri 2014 is of no concern and its a common finding and has nothing to do with my symptoms. Or the evidence is pointing to MS and to be told it is psychological when evidence suggests otherwise.
At the end of the day, this Mri is the one that notes changes, but yet to get clarification on it is like getting blood out of a turnip. And when a person has tried to personally sit with this guy to ask questions based on his tests, and being declined, i feel this in itself wasn't the right way he went about this.
People on the forum think I've gone the wrong way by sending in my written questions to him. I don't agree. This is about my health, my life, and if that Mri shows anything, it shows everyone I've dealt with regarding this Mri, have all avoided it.
I can't go looking any longer for neurologists having experienced this avoidance of this Mri. I want the Neurologist who ordered it to once and for all clarify it findings and my symptoms that i presented with in 2014.
If I'm wrong, I'm wrong and i will eat my words, it's because of the lack of clarification and avoidance of this Mri that has led to this. I cannot afford to go to another neurologist to have this Mri again pushed to the side.
It needs to be clarified by him in order for me to move on.
Three further neurologists avoided this Mri in some way. What does that tell you?
It doesn't sit right with me, and this hasn't helped my symptoms one bit. It's not acceptable for me.
If avoidance of this Mri is not telling in itself, then can anyone please tell me why no one wants to clarify it's findings.
Marian
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Yes, it's confusing. But you are not hearing the explanations. You did say you would consider moving on to a new neuro or ms neuro and that seems like a good decision.
Not much else any of us can do at this point ... Hopefully you can come to peace with your time in limbo. It IS dumbfounding, however you will have an answer at some point.
I had a permanent disability by the time I was finally diagnosed ... It is upsetting and frustrating ... But the diagnostic process depends on certain elements that must be there ... Not for us, but for the diagnosing neurologist.
Don't forget the link I sent you ... ☺️
aspen