Aa
Curious about my MRI
I decided to have a look at my MRI disks just for curiosity. My neuros want me to do a third MRI this summer before talking diagnosis, but have just said "probable MS". My curiosity is getting the better of me and I'm interested to know what they saw in there.
Any input on what this white spot is? There is nothing on the image before or after but a smaller version of the same thing or nothing.
https://docs.google.com/open?id=0B0Okts0sTjpuMTBMSlB6cFFQeWc (Sorry I couldn't figure out how to add a pic to this post directly..)
Any input on what this white spot is? There is nothing on the image before or after but a smaller version of the same thing or nothing.
https://docs.google.com/open?id=0B0Okts0sTjpuMTBMSlB6cFFQeWc (Sorry I couldn't figure out how to add a pic to this post directly..)
Sorry to just be posting back on this. Life momentarily disrupted by in-laws and bad weather.
JJ, I hope you do get those 3T MRIs. Sounds like you've had quite a time over all of this. I can understand not wanting to focus on getting official answers as I'm in a similar position at the moment. For myself personally though, I'd like to eventually start the right drugs when I know for sure what's going on. I do hope that you will eventually get the right answers.
Jane, I'm loving that website! It's all quite fascinating and amazing how many different things can happen just in our brains, for starters. A real find, thanks for sharing it!
Sandy, what a great neuro you have to go over the scans with you. Mine haven't done that and I wish that they had. I think it might be a cultural difference here in Italy that doctor's don't explain anything to patient's. I did have one doctor explain a few things to me when I really asked, but so far all they have done is to write orders for exams, procedures, and medications without any explanation. Maybe it's what people here expect? In any case, hang onto that neuro who's willing to talk things over with you! Just a few days now on your LP results! Yay! Looking forward to hearing about that soon.
Ciao for now,
Laura
JJ, I hope you do get those 3T MRIs. Sounds like you've had quite a time over all of this. I can understand not wanting to focus on getting official answers as I'm in a similar position at the moment. For myself personally though, I'd like to eventually start the right drugs when I know for sure what's going on. I do hope that you will eventually get the right answers.
Jane, I'm loving that website! It's all quite fascinating and amazing how many different things can happen just in our brains, for starters. A real find, thanks for sharing it!
Sandy, what a great neuro you have to go over the scans with you. Mine haven't done that and I wish that they had. I think it might be a cultural difference here in Italy that doctor's don't explain anything to patient's. I did have one doctor explain a few things to me when I really asked, but so far all they have done is to write orders for exams, procedures, and medications without any explanation. Maybe it's what people here expect? In any case, hang onto that neuro who's willing to talk things over with you! Just a few days now on your LP results! Yay! Looking forward to hearing about that soon.
Ciao for now,
Laura
This is a great conversation! I was very lucky. My neuro showed me the lesions on my MRI. She is awesome so far! She said the lesions could be MS, but they could also be migraines or from a couple of concussions I've had. There are a lot of lesions and they are particularly concerned about a large one.
I might have some answers in three or four days.
I picked up the cd of my MRI and I still look at my images often.
I might have some answers in three or four days.
I picked up the cd of my MRI and I still look at my images often.
COMMUNITY LEADER
Hey Laura you get to join our life membership to andonandonandon club, of which i'm a paid up member ;D
RFOL that was the first neuro, back in 09 and he was quite happy to send me on my way after telling me "it was probably senile dementia" lol i was 45, i literally giggled my way back to my car. lol He was bad enough but the one I was sent to in 2010 was worse by a long shot, my dr refered me because he was (and still is) convinced i have MS. lol i wrote a detailed time line of all the things i'd been dx with (all but 1 fit MS) he looked at it for all of 2 seconds.
Asked about family, and as soon as he heard my mother has bipolar that was it, all questions there after focused on mental health, forget about my personal history, medical history, test results, psych assessment etc lol he didn't even believe my husband of 20yrs, or my family dr or my family (gifted) psychologist. He kept asking the same questions about mental health, just frazed differently and still he got the same answer NO and he never let up, even when 'his' neuro tests were picking up problems lol he didn't believe his own tests either lol
I hit the floor twice (ouch) doing the close your eyes whilst standing feet together neuro test, nope I cant do that one. Back in 09 the first neuro found unilateral clonus and hyper refex in my left leg, this neuro got annoyed that my left leg kept jerking out and almost taking his head off (pitty) lol
He wasn't happy about that, so kept testing it over and over and over, funny how the exact same thing happened. From my perspective it was horrible, i felt like i was being repeatedly tazered, leg jerking out and the muscle spasms, OMG one spasm set the next muscle spasm off, all the way up to my groin, i wont repeat that in a hurry!
This twit of a nuero knew next to nothing about MS, so many incorrect statements lol eg my double vision, nastagmus etc was dismissed because "there isn't any visual sx with MS", errr what?! So anyway, i'm sitting there, my left leg still buzzing, my shakes are building and he happily tells me there's nothing wrong with me. When i asked him about my tremors he calmly states "anyone can shake their hand" my mouth just about hit my lap. ha yeah and they stab themselves in the face for kicks and giggles, eating dinner too! lol my body hasn't stopped moving since 09.
I was screaming some very unlady like things in my head, then the twit starts telling DH that i remind him of a girl he saw 30 years ago, and starts talking about a bunch of tests he wants to send me for, including repeat MRI's hmmmm so if theres nothing wrong then why more tests, dufus! It wouldn't of mattered, I was never ever going to believe a word that came out of his mouth, nope i was done!
Anyhooooo here we are in 2012, and i've avoided the world where neurologist inhabit, meds and everything else related, just living, loving and chilling! Its time though, really time, my bells already been rung so nothing's going to undo whats been done but when it gets bad i wish i'd stop moving just a little bit and maybe stop falling over cause the floors wonkier than my brain lol and a few other things.
Naw its cool, no point wishing cause it is what it is, the dx isn't going to do anything for me but make it official so i'm not really focused on that, though i am waiting to here about getting 3T MRI's from a private clinic, so i'm not totally opposed lol just not driven.
Cheers...........JJ
see andonandonandon club member
RFOL that was the first neuro, back in 09 and he was quite happy to send me on my way after telling me "it was probably senile dementia" lol i was 45, i literally giggled my way back to my car. lol He was bad enough but the one I was sent to in 2010 was worse by a long shot, my dr refered me because he was (and still is) convinced i have MS. lol i wrote a detailed time line of all the things i'd been dx with (all but 1 fit MS) he looked at it for all of 2 seconds.
Asked about family, and as soon as he heard my mother has bipolar that was it, all questions there after focused on mental health, forget about my personal history, medical history, test results, psych assessment etc lol he didn't even believe my husband of 20yrs, or my family dr or my family (gifted) psychologist. He kept asking the same questions about mental health, just frazed differently and still he got the same answer NO and he never let up, even when 'his' neuro tests were picking up problems lol he didn't believe his own tests either lol
I hit the floor twice (ouch) doing the close your eyes whilst standing feet together neuro test, nope I cant do that one. Back in 09 the first neuro found unilateral clonus and hyper refex in my left leg, this neuro got annoyed that my left leg kept jerking out and almost taking his head off (pitty) lol
He wasn't happy about that, so kept testing it over and over and over, funny how the exact same thing happened. From my perspective it was horrible, i felt like i was being repeatedly tazered, leg jerking out and the muscle spasms, OMG one spasm set the next muscle spasm off, all the way up to my groin, i wont repeat that in a hurry!
This twit of a nuero knew next to nothing about MS, so many incorrect statements lol eg my double vision, nastagmus etc was dismissed because "there isn't any visual sx with MS", errr what?! So anyway, i'm sitting there, my left leg still buzzing, my shakes are building and he happily tells me there's nothing wrong with me. When i asked him about my tremors he calmly states "anyone can shake their hand" my mouth just about hit my lap. ha yeah and they stab themselves in the face for kicks and giggles, eating dinner too! lol my body hasn't stopped moving since 09.
I was screaming some very unlady like things in my head, then the twit starts telling DH that i remind him of a girl he saw 30 years ago, and starts talking about a bunch of tests he wants to send me for, including repeat MRI's hmmmm so if theres nothing wrong then why more tests, dufus! It wouldn't of mattered, I was never ever going to believe a word that came out of his mouth, nope i was done!
Anyhooooo here we are in 2012, and i've avoided the world where neurologist inhabit, meds and everything else related, just living, loving and chilling! Its time though, really time, my bells already been rung so nothing's going to undo whats been done but when it gets bad i wish i'd stop moving just a little bit and maybe stop falling over cause the floors wonkier than my brain lol and a few other things.
Naw its cool, no point wishing cause it is what it is, the dx isn't going to do anything for me but make it official so i'm not really focused on that, though i am waiting to here about getting 3T MRI's from a private clinic, so i'm not totally opposed lol just not driven.
Cheers...........JJ
see andonandonandon club member
what a wonderful conversation going on here, it illustrates how difficult this really can be. I certainly don't have the brain power for radiology.
Jane, If I go AWOL it will be all your fault if I disappear for hours on end - that web site is brilliant! I can't wait to have the time to really look at those files.
-L
Jane, If I go AWOL it will be all your fault if I disappear for hours on end - that web site is brilliant! I can't wait to have the time to really look at those files.
-L
Jane, I agree that someone could spend years looking at that site and I could easily become one of those "someone"s. lol... There is little wonder that it takes some time sometimes to diagnose us when neuro's have so many things to weed through. From another point of view though, they've studied this subject for so many years that I'm always amazed at how much MIS-diagnosing is done as well.
JJ, I'm appalled that your doctor didn't at least discuss the lesions with you, regardless of whatever the reason he thought they were there. Sounds like he should have been on the receiving end of some of those psych tests if you ask me. Can I ask though, have you stayed with him? Seen other docs since? I hope you are getting better care now. Have you had followup MRIs?
When I first went to the doctor with eye pain, everything looking dark and flat, and diplopia and was referred to a neuro who did some tests on me, her diagnosis was siero-negative ocular myasthenia gravis and my slew of other symptoms were labeled idiopathic. She also said when the sight in one eye fizzled out and then returned with washed out colors that it was idiopathic and "impossible for someone with MG". Duh, should have been a clue, right? After 6ish months or so of this doctor, and hearing from everyone around me, including the ER neuros when I had pain around my ribs and a top neuro from university of Chicago, that MG seemed unlikely to them and that I should see an MS specialist, I decided to read a little bit about it on my own. I picked up Adam's and Victor's Principles of Neurology and read it (all 1400 or so pages - yes, tons of time on my hands at this point). Just being able to do so without the diplopia returning signaled to me that MG was an odd dx since it should worsen with reading, etc. At this point I think my flare was more or less over.
So, I broke down and went to see two other neuros in two different hospitals. Who both said MG was far out and not to do the surgery my first neuro was pushing. They both suggested MS and to make a long story short, that's the only theory left standing. In the meantime, for the sake of sanity, I've accepted that this is likely MS and to get on with life as best as I can. I was, at one time, very stressed that the diagnosing and getting medication part was being delayed and taking so long, but at this point, I've accepted that 6 months or a year will not make much of a difference as long as this is actually MS as my doctors think. This time, what I've read and what they say makes sense to me and I think they're on the right track, so why worry, right?
My personal opinion is that no one should trust one doctor completely without having at least one other unbiased opinion from another experience doctor that matches up. My mom had a brain tumor and when she went in to the ER unconscious, the ER doc decided it had to be her gallbladder and had my dad not advocated for her on getting a second opinion, she would have died in the OR. (The neuro-surgeon said when he saw an hour or so later that she had less than 24 hrs to live without intervention.) My grandma trusted that her doctor's office would call her back with results after testing if something was wrong. Turns out, the doctor retired before bothering to let her know that she had cancer and because she didn't get those results or any treatment until 8 months later, her next test showed that it had spread throughout her body and she died soon after.
My point? We can't and shouldn't diagnose ourselves, but being proactively involved in our own healthcare is a good thing, maybe even our duty to ourselves. We do ourselves a favor by knowing what we can about what's going on in our bodies. Even though my first neuro is the one who went to school for this, etc, according to her peers and what my body is telling me, she is way off the mark. Had I gone along with her prescription for me without doing some of my own checking, I'd now have a fractured sternum and lifelong scar for a disease that I don't really have. To me, this is scary and sad.
Sorry this is such a long post. Once I get started, I do go on and on... Anyway, this is why I think having a look at my own tests is good. That plus the fact that they're just so darn fascinating!
Laura
JJ, I'm appalled that your doctor didn't at least discuss the lesions with you, regardless of whatever the reason he thought they were there. Sounds like he should have been on the receiving end of some of those psych tests if you ask me. Can I ask though, have you stayed with him? Seen other docs since? I hope you are getting better care now. Have you had followup MRIs?
When I first went to the doctor with eye pain, everything looking dark and flat, and diplopia and was referred to a neuro who did some tests on me, her diagnosis was siero-negative ocular myasthenia gravis and my slew of other symptoms were labeled idiopathic. She also said when the sight in one eye fizzled out and then returned with washed out colors that it was idiopathic and "impossible for someone with MG". Duh, should have been a clue, right? After 6ish months or so of this doctor, and hearing from everyone around me, including the ER neuros when I had pain around my ribs and a top neuro from university of Chicago, that MG seemed unlikely to them and that I should see an MS specialist, I decided to read a little bit about it on my own. I picked up Adam's and Victor's Principles of Neurology and read it (all 1400 or so pages - yes, tons of time on my hands at this point). Just being able to do so without the diplopia returning signaled to me that MG was an odd dx since it should worsen with reading, etc. At this point I think my flare was more or less over.
So, I broke down and went to see two other neuros in two different hospitals. Who both said MG was far out and not to do the surgery my first neuro was pushing. They both suggested MS and to make a long story short, that's the only theory left standing. In the meantime, for the sake of sanity, I've accepted that this is likely MS and to get on with life as best as I can. I was, at one time, very stressed that the diagnosing and getting medication part was being delayed and taking so long, but at this point, I've accepted that 6 months or a year will not make much of a difference as long as this is actually MS as my doctors think. This time, what I've read and what they say makes sense to me and I think they're on the right track, so why worry, right?
My personal opinion is that no one should trust one doctor completely without having at least one other unbiased opinion from another experience doctor that matches up. My mom had a brain tumor and when she went in to the ER unconscious, the ER doc decided it had to be her gallbladder and had my dad not advocated for her on getting a second opinion, she would have died in the OR. (The neuro-surgeon said when he saw an hour or so later that she had less than 24 hrs to live without intervention.) My grandma trusted that her doctor's office would call her back with results after testing if something was wrong. Turns out, the doctor retired before bothering to let her know that she had cancer and because she didn't get those results or any treatment until 8 months later, her next test showed that it had spread throughout her body and she died soon after.
My point? We can't and shouldn't diagnose ourselves, but being proactively involved in our own healthcare is a good thing, maybe even our duty to ourselves. We do ourselves a favor by knowing what we can about what's going on in our bodies. Even though my first neuro is the one who went to school for this, etc, according to her peers and what my body is telling me, she is way off the mark. Had I gone along with her prescription for me without doing some of my own checking, I'd now have a fractured sternum and lifelong scar for a disease that I don't really have. To me, this is scary and sad.
Sorry this is such a long post. Once I get started, I do go on and on... Anyway, this is why I think having a look at my own tests is good. That plus the fact that they're just so darn fascinating!
Laura
COMMUNITY LEADER
hmmmm another true story, i had my big bang in 09, first time i started walking like a string puppet, lost pre-existing communication abilities, and (gifted) cognitive ablilities, there was no doubt my brain had fried out on me but there was dx idiopathic weirdness (sx of MS) granted on a lesser OMG scale, but it all predates the birth of our youngest and he's 15 this year.
Saw a neuro who found clinical signs and sent me for an 1.5T MRI (brain & spine) originally he said he wasn't 100% convinced it was MS yet, radiologist initiating a conversation about how long i'd had MS etc but when i returned to the neuro, he told me i had "a perfect brain with zero lesions", his about face attitude was a total shocker. Had mental health testing - no issue there, had visual testing - findings consistent with MS, had cognitive testing - significant decline consistent with areas of decline seen in MS.
A year or so goes by and finally i get my hands on the report and a copy of the MRI's. What was totally unexpected was the report stating I had a "chronic number of white matter and deep white matter lesions inconsistent to my age" i expected "zero lesions" as stated by the neuro but that turned out to be an untruth.
With burning curiosity, DH takes the disk to work to run them, what he see's he found very confronting, slide after slide showing multiple lesions that just shouldn't be there lol you can miss the odd one but no way could you miss this many. Only logical explanation we can fathom is they were just dismissed as 'silent' vascular lesions but hey dipstick you forgot the reason you sent this patient for the MRI in the first place, err those clinical signs of lesions lol
Soooo the moral of this story is, curiosity isn't always a bad thing lol for me it explained a lot though i wouldn't presume anything more than, if they go looking for lesions and yep they find lesions, it makes no logical sense to then ignore what you do find. lol Finding MRI's of the brain totally facinating is par for the course here but its not a good idea to try to distinguish a singular blip or unidentified bright object (UBO) from a demyelinating lesion, for that you really do need training.
Curious cat..........(AKA).......JJ
Saw a neuro who found clinical signs and sent me for an 1.5T MRI (brain & spine) originally he said he wasn't 100% convinced it was MS yet, radiologist initiating a conversation about how long i'd had MS etc but when i returned to the neuro, he told me i had "a perfect brain with zero lesions", his about face attitude was a total shocker. Had mental health testing - no issue there, had visual testing - findings consistent with MS, had cognitive testing - significant decline consistent with areas of decline seen in MS.
A year or so goes by and finally i get my hands on the report and a copy of the MRI's. What was totally unexpected was the report stating I had a "chronic number of white matter and deep white matter lesions inconsistent to my age" i expected "zero lesions" as stated by the neuro but that turned out to be an untruth.
With burning curiosity, DH takes the disk to work to run them, what he see's he found very confronting, slide after slide showing multiple lesions that just shouldn't be there lol you can miss the odd one but no way could you miss this many. Only logical explanation we can fathom is they were just dismissed as 'silent' vascular lesions but hey dipstick you forgot the reason you sent this patient for the MRI in the first place, err those clinical signs of lesions lol
Soooo the moral of this story is, curiosity isn't always a bad thing lol for me it explained a lot though i wouldn't presume anything more than, if they go looking for lesions and yep they find lesions, it makes no logical sense to then ignore what you do find. lol Finding MRI's of the brain totally facinating is par for the course here but its not a good idea to try to distinguish a singular blip or unidentified bright object (UBO) from a demyelinating lesion, for that you really do need training.
Curious cat..........(AKA).......JJ
One could spend years on that site. Just the "brain" section contains over 400 case studies (with MRI's and clinical info). Some diagnoses I had never heard of include:
Case 3 Capillary telangiectasia
Case 18 Juvenile pilocytic astrocytoma
Case 21 Dysembryoplastic neuroepithelial tumor
Case 23 Superficial siderosis
Case 27 Intracranial lipoma
Case 37 Craniosynostosis
Case 45 Cerebral amyloid angiopathy
Case 50 Astrocytoma, obstructing hydrocephalus
Case 56 Hurler's syndrome
Case 57 Ependymoma
Case 65 Meningioma
Case 69 Craniopharyngioma
Case 77 Ectopic posterior pituitary
Case 81 Primary CNS arteritis
Case 96 Pineal germinoma
Case 246 Rhomboencephalosynapsis
Case 253 Tuberous sclerosis
Case 265 Cavum velum interpositum, Neurosarcoid
Case 279 Methanol toxicity
Case 303 Neurofibromatosis type I
Case 344 Septo-optic dysplasia
Case 346 Internal carotid artery dissection
Case 347 Acute thalamic infarct
Case 360 Creutzfeldt-Jakob disease
I think it speaks to the level of complexity of the study of neurology, and why so many of us wait so long to find out what's going on with our bodies.
- Jane
Case 3 Capillary telangiectasia
Case 18 Juvenile pilocytic astrocytoma
Case 21 Dysembryoplastic neuroepithelial tumor
Case 23 Superficial siderosis
Case 27 Intracranial lipoma
Case 37 Craniosynostosis
Case 45 Cerebral amyloid angiopathy
Case 50 Astrocytoma, obstructing hydrocephalus
Case 56 Hurler's syndrome
Case 57 Ependymoma
Case 65 Meningioma
Case 69 Craniopharyngioma
Case 77 Ectopic posterior pituitary
Case 81 Primary CNS arteritis
Case 96 Pineal germinoma
Case 246 Rhomboencephalosynapsis
Case 253 Tuberous sclerosis
Case 265 Cavum velum interpositum, Neurosarcoid
Case 279 Methanol toxicity
Case 303 Neurofibromatosis type I
Case 344 Septo-optic dysplasia
Case 346 Internal carotid artery dissection
Case 347 Acute thalamic infarct
Case 360 Creutzfeldt-Jakob disease
I think it speaks to the level of complexity of the study of neurology, and why so many of us wait so long to find out what's going on with our bodies.
- Jane
Kyle, good story. Just to clarify, I'm not stressed about this or into self-diagnosing, truly just curious about the images. For me, understanding what I can of the scientific part of this disease has been the therapeutic distraction I needed to find acceptance for this whole situation. Although, I must admit, I should have considered becoming a radiologist. :-)
Tammy, sorry the link didn't work. Once I get back to my computer, I'll try to figure out how to add the picture here. Great images from jensequiter, btw.
Tammy, sorry the link didn't work. Once I get back to my computer, I'll try to figure out how to add the picture here. Great images from jensequiter, btw.
The link is working for me. I have no input on the image, but wanted you to know that the link is not bad.
For those that like looking at images, I found this cool site the other day: http://headneckbrainspine.com/
- Jane
For those that like looking at images, I found this cool site the other day: http://headneckbrainspine.com/
- Jane
I'm sorry. I tried to follow the link, but got an error message. I don't practice radiology either, but I always find the images interesting. I'll keep watching this discussion. Maybe someone else could tell you how to add the pics to this site. You could ask jensequiter. She posted images yesterday.
Tammy
Tammy
Here is a true story that I've told before...
20 years ago, during what turned out to be my first MS episode, I was sent to get images of my brain. This was Pre-CD and I picked up the films to bring to my neurologist. I sat in my car and pulled them out. The first thing I saw was a large black spot right at the base of my brain.
That's it, I thought. Brain Tumor! I'm a gonner! When I got tot the doctor he but the film up into the light box. He immediately pointed to the exact same black spot. "Your blood flow looks excellent." he said. :-)
That was the last time I practiced radiology :-)
Kyle
20 years ago, during what turned out to be my first MS episode, I was sent to get images of my brain. This was Pre-CD and I picked up the films to bring to my neurologist. I sat in my car and pulled them out. The first thing I saw was a large black spot right at the base of my brain.
That's it, I thought. Brain Tumor! I'm a gonner! When I got tot the doctor he but the film up into the light box. He immediately pointed to the exact same black spot. "Your blood flow looks excellent." he said. :-)
That was the last time I practiced radiology :-)
Kyle
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