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Tuberous lesions!
Anyone heard of or have MRI photos of 'Tuberous Brain Lesions'?
My MRI photo does not show up as well on here as it does my computer. It has 2 obvious white spots that I don't know how they were missed? I have more MRI photos that look unlike anything I have found so far abt lesions except, they are VERY much like the photo of Tuberous lesions that I came accross on a educational website-MedPix I think? I will try to brighten them before I upload them. In the meantime if anyone has any info or a photo of these types of lesions I would sure like to compare. My photo is loaded with whatever it is in my brain. Also, it appears as I have a crack in my brain on one side that goes abt 1/4 way thru it-from center to abt behind my ear-odd, not even noted either on my MRI report? I had 2 MRIs before this one & I can't believe they are all mine as they are all so different. Each of the 3 MRIs are about 1 1/2 years apart.
My MRI photo does not show up as well on here as it does my computer. It has 2 obvious white spots that I don't know how they were missed? I have more MRI photos that look unlike anything I have found so far abt lesions except, they are VERY much like the photo of Tuberous lesions that I came accross on a educational website-MedPix I think? I will try to brighten them before I upload them. In the meantime if anyone has any info or a photo of these types of lesions I would sure like to compare. My photo is loaded with whatever it is in my brain. Also, it appears as I have a crack in my brain on one side that goes abt 1/4 way thru it-from center to abt behind my ear-odd, not even noted either on my MRI report? I had 2 MRIs before this one & I can't believe they are all mine as they are all so different. Each of the 3 MRIs are about 1 1/2 years apart.
I have looked at my own MRI's and have no idea what I'm looking at lol To me it all looks abnormal :) I do agree though if you know what your looking for it is fine to look and question your Dr. or radiologist etc. We are all human and even the best can miss things.
Someone on here has pointed out things on my scans which has been a great help, at least when I go to my Dr. appt on Friday I'll have some things to point out if needed. Maybe it's all normal and maybe it's not? I sure haven't a clue.
Someone on here has pointed out things on my scans which has been a great help, at least when I go to my Dr. appt on Friday I'll have some things to point out if needed. Maybe it's all normal and maybe it's not? I sure haven't a clue.
I understand. 100%. Absolutely.
And - you will be glad to know, that I have learned to read my own MRIs and I can DEFINITIVELTY say that something has been missed on EVERY SINGLE one of my last (4) MRIs.
Every
Single
One
I was the one to point it out to the doctor - who looked at me and asked if that is what I do. Read MRIs that is.
No. It's not. But I have educated myself because of the PURE LACK OF ability, professionalism, knowledge and you name it. Why on earth the SENIOR radiologist should miss my little old pons lesion, 2 NEW cervical lesions and....oh - is that a little medulla lesion you missed, too?
I understand your frustration 1000%.
Knowledge is your best weapon. Go in armed and do not take a pathetic doctor's "no" until you are confident that they "know" and understand your concerns.
They work for you. It's not the other way around.
I truly hope you find the answers you are looking for.
And - you will be glad to know, that I have learned to read my own MRIs and I can DEFINITIVELTY say that something has been missed on EVERY SINGLE one of my last (4) MRIs.
Every
Single
One
I was the one to point it out to the doctor - who looked at me and asked if that is what I do. Read MRIs that is.
No. It's not. But I have educated myself because of the PURE LACK OF ability, professionalism, knowledge and you name it. Why on earth the SENIOR radiologist should miss my little old pons lesion, 2 NEW cervical lesions and....oh - is that a little medulla lesion you missed, too?
I understand your frustration 1000%.
Knowledge is your best weapon. Go in armed and do not take a pathetic doctor's "no" until you are confident that they "know" and understand your concerns.
They work for you. It's not the other way around.
I truly hope you find the answers you are looking for.
I'll post the same thing I said on another thread.
"The thing about reading other peoples MRI's... is that there are many different layers or slices that also need to be looked at to see the "history" surrounding the images.
I think I am the odd one out of this group. I agree that doctors have years and years of experience looking at these and being able to see things clearer...they should be reading these....but I do encourage people to look over their own MRI's and ask questions about them...just like any other medical test.
If you see something that genuinely looks out of place then, like many things in our world, it's important to be able to question ANYTHING that is concerning your body. If you don't get a doctor who will go over the MRI's with you, move on."
"The thing about reading other peoples MRI's... is that there are many different layers or slices that also need to be looked at to see the "history" surrounding the images.
I think I am the odd one out of this group. I agree that doctors have years and years of experience looking at these and being able to see things clearer...they should be reading these....but I do encourage people to look over their own MRI's and ask questions about them...just like any other medical test.
If you see something that genuinely looks out of place then, like many things in our world, it's important to be able to question ANYTHING that is concerning your body. If you don't get a doctor who will go over the MRI's with you, move on."
I am not am expert but I have been diagnosed with MS and have had several MRIs. I've also looked through the CD of my most recent brain MRI.
The image you posted is a T1-weighted image. So the bright spots are probably the blood flowing in blood vessels that run from side to side in that area of the brain.
My MRI contains different sequences in which the same lesions appear quite different. In the T2-weighted sequences, my lesions appear bright.
In the T1-weighted sequence, lesions will appear bright if they are "enhancing" (currently active). A lesion enhances (shows up bright on T1-weighted images) if the gadolinium (contrast agent) "leaks through" the blood brain barrier into the area surrounding the blood vessels.
An area of the brain that shows up bright in the T2-weighted sequence and dark in the T1-weighted sequence may be a black hole. (I have a number of those.)
According to a website about MRIs, "virtually everything of clinical significance in an MRI image (tumors, MS, infection, etc.) get bright on T2-weighted images and darker on T1 weighted images. This is due to the fact that all these things have increased water content."
This same website says "things that appear bright on a T1 lesion are fat, gadolinium (the contrast agent), flow of liquid (usually blood) in a direction perpendicular to the slice-select plane, Blood products (2-7 days methemaglobin), Melanin, Protienaceous fluid collections, fat/waxy tumors-cholesteratomas, etc."
No one was trying to be insensitive when they told you MRIs were difficult to interpret. They really are.
By the way, I really hear you about medical incompetence. We've had a death in the family due to a missed diagnosis.
Wishing you well
The image you posted is a T1-weighted image. So the bright spots are probably the blood flowing in blood vessels that run from side to side in that area of the brain.
My MRI contains different sequences in which the same lesions appear quite different. In the T2-weighted sequences, my lesions appear bright.
In the T1-weighted sequence, lesions will appear bright if they are "enhancing" (currently active). A lesion enhances (shows up bright on T1-weighted images) if the gadolinium (contrast agent) "leaks through" the blood brain barrier into the area surrounding the blood vessels.
An area of the brain that shows up bright in the T2-weighted sequence and dark in the T1-weighted sequence may be a black hole. (I have a number of those.)
According to a website about MRIs, "virtually everything of clinical significance in an MRI image (tumors, MS, infection, etc.) get bright on T2-weighted images and darker on T1 weighted images. This is due to the fact that all these things have increased water content."
This same website says "things that appear bright on a T1 lesion are fat, gadolinium (the contrast agent), flow of liquid (usually blood) in a direction perpendicular to the slice-select plane, Blood products (2-7 days methemaglobin), Melanin, Protienaceous fluid collections, fat/waxy tumors-cholesteratomas, etc."
No one was trying to be insensitive when they told you MRIs were difficult to interpret. They really are.
By the way, I really hear you about medical incompetence. We've had a death in the family due to a missed diagnosis.
Wishing you well
HI, I wanted to comment on your post if I may. I was in limbo for over 5 years with the same spots that were "too round and not oval". Each doctor read what the previous doctor wrote and believed the same thing. They diagnosed migraines as the cause of my spots. Well, I do have migraines, severe ones that interrupt my life but I also have MS.
I understand your anger at the medical profession and I am truly sorry that your husband was not diagnosed by a competent doctor.
As for reading MRIs, it is a difficult science to learn and the best persons to do this are neuro-radiologists not just "regular" radiologists. My last MRI said do not base MS diagnosis on this MRI. Well, I've been diagnosed over 2 years now and am accumulating more symptoms as time goes by but according to the radiologists , I don't have MS. My MS neurologists believes I do based on my clinical exam which should point to the dx. The MRI is to back up the dx. MS was diagnosed long before MRIs were used in the medical field and this was done on the patient's symptoms.
There are a lot of incompetent doctors, unfortunately and if you aren't getting anywhere with the doctor you have , you need to find a reliable neurologist you are confident in .
As for people here on the forum reading their MRIs, even Quix who is a retired pediatrician does not pretend to know how to read and understand all the nuances of reading the MRI and has stated this on the forum previously. Reading our own MRIs are just about the only thing we do not compare notes on.
I am sorry you were unhappy with the response you received. I , for one, have never heard of tuberous MS lesions. They may exist , I just have no knowledge about them. If you'd like I can research the topic for you in some of the medical sites I use and share the information with you.
I do hope that you get a diagnosis so you can get treatment and do those things you are missing out on! I know the guilt and empty feeling of watching your kids and not being able to physically participate in their school functions, etc. I had to quit all my volunteer activities and cannot physically be there for all that they are involved in. It makes me mad at the MS and sad that my children are unable to have me there.
AS mentioned before, you can make an appointment with a neuro-radiologist and have him/her go over your MRIs with you. I do know not all bright spots are lesions. Some structures of the brain appear bright as well.
Ren
I understand your anger at the medical profession and I am truly sorry that your husband was not diagnosed by a competent doctor.
As for reading MRIs, it is a difficult science to learn and the best persons to do this are neuro-radiologists not just "regular" radiologists. My last MRI said do not base MS diagnosis on this MRI. Well, I've been diagnosed over 2 years now and am accumulating more symptoms as time goes by but according to the radiologists , I don't have MS. My MS neurologists believes I do based on my clinical exam which should point to the dx. The MRI is to back up the dx. MS was diagnosed long before MRIs were used in the medical field and this was done on the patient's symptoms.
There are a lot of incompetent doctors, unfortunately and if you aren't getting anywhere with the doctor you have , you need to find a reliable neurologist you are confident in .
As for people here on the forum reading their MRIs, even Quix who is a retired pediatrician does not pretend to know how to read and understand all the nuances of reading the MRI and has stated this on the forum previously. Reading our own MRIs are just about the only thing we do not compare notes on.
I am sorry you were unhappy with the response you received. I , for one, have never heard of tuberous MS lesions. They may exist , I just have no knowledge about them. If you'd like I can research the topic for you in some of the medical sites I use and share the information with you.
I do hope that you get a diagnosis so you can get treatment and do those things you are missing out on! I know the guilt and empty feeling of watching your kids and not being able to physically participate in their school functions, etc. I had to quit all my volunteer activities and cannot physically be there for all that they are involved in. It makes me mad at the MS and sad that my children are unable to have me there.
AS mentioned before, you can make an appointment with a neuro-radiologist and have him/her go over your MRIs with you. I do know not all bright spots are lesions. Some structures of the brain appear bright as well.
Ren
Sorry you feel that way.
MS and tuberous sclerosis are entirely different disorders. In fact, I had never even heard of tuberous sclerosis before your post. At that point I looked it up and learned what I did.
It's very sad that your husband got such poor care. Yo.u have my deepest sympathy. I don't know whether not you have MS. I do know that MRI interpretation is best left to professionals.
No one with MS can be called lucky.
ess
MS and tuberous sclerosis are entirely different disorders. In fact, I had never even heard of tuberous sclerosis before your post. At that point I looked it up and learned what I did.
It's very sad that your husband got such poor care. Yo.u have my deepest sympathy. I don't know whether not you have MS. I do know that MRI interpretation is best left to professionals.
No one with MS can be called lucky.
ess
Hello, I'm not sure if you could SEE my MRI pic 'clearly' but it has some spots which are suspiciously like MS Lesions-not the Tuberous ones-I haven't loaded those pics yet. Apparently you are not aware tho of Tuberous Lesions are MS. I wasn't asking if they are, I already know they are. I was wondering if anyone else has those so as to compare. I was looking for some help on the subject to figure this out as my mom went undiagnosed with MS for sure & I have 4 kids & grandkids who need to know family medical hx too!
I have to disagree with both of you bc if I would have disagreed with my husband's diagnosis (which I questioned a few times) for over 12 years & with all the numerous Drs who copycatted each other-seemed as none were able to make their own decisions or diagnosis 'Whatever he said' (the previous Drs)...or defy the previous drs dx...my husband would still be alive! He died 7-30-10 from the most preventable Colorectal Cancer bc over 10 Drs said it was 'HEMEROIDS' making him crap toilets FULL of blood for over 12 years! You know when something doesn't seem right (the dx-don't you? I'm no specialist but I was an idiot once!) 3 weeks before he passed he had a PET scan & it showed cancer that was 2 centemetrs or larger(imagine all the smaller ones that didnt show up)-I will never forget how many brite spots showed up! He had cancer in EVERY organ & up under his brain & in his collar bone-shoulder bone-4 ribs-hip bone-pelvic bone-his spine was threaded & saturated with cancer! L1-L2 was solid tumor-NO bone! 3 months before he died he was denied pain medication at an urgent care! He was on Paliative care! Can you imagine the pain? I doubt it if you can't imagine that some are misdiagnosed! He was so tough tho-he walked up to 2 days before he died! One thing came out of this is our kids & grandkids now have family medical hx for Genetic Colorectal Cancer-who knew? We didnt! He didnt know his dad! We didnt know the symptoms for CRC-do you? In 2006 he had back surgery-they didnt find it then-the REAL reason for his pain! A few months later a Tens implant for his back, they didnt find the cancer then either! In 2-2010 his Gallbladder was removed(bc he couldnt BM-the tumor COMPLETELY blocked his bowels-ubstructed) & they didnt even find the cancer then either! He saw so many drs in between 2005 & 2010 that he was flagged as Dr shoppin & a narcotics fiend! What would you do with cancer all over inside of you & in your bones? We werent together for the last 3 years bc the Drs told me he was a narcotic fiend-he was with me tho for the last 2 months AFTER I found out he had cancer & WHY he was after the pills so much! He told me "I told you I was hurting BAD" ! I have horrible guilt for 'TRUSTING those Drs! So, WHO is it I should trust again?
Perhaps in an ideal world we can all trust our Drs & not question anything-I wish I had your Dr & Radiologist! So glad you have better luck than my family with medical care!
My desired outcome is to get out of this bed a few more times! To spend quality time with my family! To be able to do anything I want again! To drive w/o narcolepsey! To Get over this! I have been bed ridden for over 4 years from MS! Since June 2006 when the 1st dr ever said to me "I think you have MS"! I told her she was wrong! I had no idea that the 'Unique & Bazar' symptoms I'd had off & on for all my adult life were of MS! I was tough & was just glad when I could move again & get out of bed at 26yo! I was just so glad whenthat burning finally stopped! I was s glad to be able to play basebal with my kids-chaperone their dances-be the popcorn mom at school again! I was just so glad that 'Whatever that was was gone'! Untill it happened again & then again...given that & tests that I have had I did not get dx till 7-26-11! I had HIGH Protien in my spinal Tap in 11-2008 along with Lesions so why wasn't I dx then? My Neuro lied to me, he told me "All your tests came back negative, you don't have MS"-I never knew abt the HIGH Protien til 1 1/2 years later when I looked at my records! ! He implied to my PC Dr that he did a nerve conduction study on me-he never did! He implied that he refered me to Neuro at UCDavis-he never did! All of this is charted in my 2 'Seperate files' he has on me? I was never supposed to see the records I got from volume 2! I even wonder if he charged the insurance for the test?
I just started seeing a new Neuro who dx me but without conviction as he seems scared of the other DR! Oh yeah, the same Radiology Dept did my last 2 MRIs! The 1st MRI they read "Lesions are insignificant"! The latest "No change from compared to..stable brain appearance"! Seriously? The differences are TREMEDOUS!
So, I guess I must be in the wrong site for help-to compare notes-or whatever you all do here. What exactly do you all do here? Sorry to have bothered you with trying to figure out what all the spots are that werent there last MRI 1 1/2 years ago & the spots that were on that one that wasn't there 1 1/2 years before that! In 2006 I had a VERY normal looking Brain MRI except for a brite spot & a couple lessor spots 1 was a definate lesion. in 2009 a few more spots that resembled that lesion "Insignificant Lesions"! this one in 2011 has more but also what looks very much like Tuberous Lesions as in MS Tuberous Lesions.
Well, I've told you more than I should have & more than I intended to! I came here for help but as usual I have had the worst of luck!
Good Luck to you all! Oh yeah, YOU'VE had all the luck!
I have to disagree with both of you bc if I would have disagreed with my husband's diagnosis (which I questioned a few times) for over 12 years & with all the numerous Drs who copycatted each other-seemed as none were able to make their own decisions or diagnosis 'Whatever he said' (the previous Drs)...or defy the previous drs dx...my husband would still be alive! He died 7-30-10 from the most preventable Colorectal Cancer bc over 10 Drs said it was 'HEMEROIDS' making him crap toilets FULL of blood for over 12 years! You know when something doesn't seem right (the dx-don't you? I'm no specialist but I was an idiot once!) 3 weeks before he passed he had a PET scan & it showed cancer that was 2 centemetrs or larger(imagine all the smaller ones that didnt show up)-I will never forget how many brite spots showed up! He had cancer in EVERY organ & up under his brain & in his collar bone-shoulder bone-4 ribs-hip bone-pelvic bone-his spine was threaded & saturated with cancer! L1-L2 was solid tumor-NO bone! 3 months before he died he was denied pain medication at an urgent care! He was on Paliative care! Can you imagine the pain? I doubt it if you can't imagine that some are misdiagnosed! He was so tough tho-he walked up to 2 days before he died! One thing came out of this is our kids & grandkids now have family medical hx for Genetic Colorectal Cancer-who knew? We didnt! He didnt know his dad! We didnt know the symptoms for CRC-do you? In 2006 he had back surgery-they didnt find it then-the REAL reason for his pain! A few months later a Tens implant for his back, they didnt find the cancer then either! In 2-2010 his Gallbladder was removed(bc he couldnt BM-the tumor COMPLETELY blocked his bowels-ubstructed) & they didnt even find the cancer then either! He saw so many drs in between 2005 & 2010 that he was flagged as Dr shoppin & a narcotics fiend! What would you do with cancer all over inside of you & in your bones? We werent together for the last 3 years bc the Drs told me he was a narcotic fiend-he was with me tho for the last 2 months AFTER I found out he had cancer & WHY he was after the pills so much! He told me "I told you I was hurting BAD" ! I have horrible guilt for 'TRUSTING those Drs! So, WHO is it I should trust again?
Perhaps in an ideal world we can all trust our Drs & not question anything-I wish I had your Dr & Radiologist! So glad you have better luck than my family with medical care!
My desired outcome is to get out of this bed a few more times! To spend quality time with my family! To be able to do anything I want again! To drive w/o narcolepsey! To Get over this! I have been bed ridden for over 4 years from MS! Since June 2006 when the 1st dr ever said to me "I think you have MS"! I told her she was wrong! I had no idea that the 'Unique & Bazar' symptoms I'd had off & on for all my adult life were of MS! I was tough & was just glad when I could move again & get out of bed at 26yo! I was just so glad whenthat burning finally stopped! I was s glad to be able to play basebal with my kids-chaperone their dances-be the popcorn mom at school again! I was just so glad that 'Whatever that was was gone'! Untill it happened again & then again...given that & tests that I have had I did not get dx till 7-26-11! I had HIGH Protien in my spinal Tap in 11-2008 along with Lesions so why wasn't I dx then? My Neuro lied to me, he told me "All your tests came back negative, you don't have MS"-I never knew abt the HIGH Protien til 1 1/2 years later when I looked at my records! ! He implied to my PC Dr that he did a nerve conduction study on me-he never did! He implied that he refered me to Neuro at UCDavis-he never did! All of this is charted in my 2 'Seperate files' he has on me? I was never supposed to see the records I got from volume 2! I even wonder if he charged the insurance for the test?
I just started seeing a new Neuro who dx me but without conviction as he seems scared of the other DR! Oh yeah, the same Radiology Dept did my last 2 MRIs! The 1st MRI they read "Lesions are insignificant"! The latest "No change from compared to..stable brain appearance"! Seriously? The differences are TREMEDOUS!
So, I guess I must be in the wrong site for help-to compare notes-or whatever you all do here. What exactly do you all do here? Sorry to have bothered you with trying to figure out what all the spots are that werent there last MRI 1 1/2 years ago & the spots that were on that one that wasn't there 1 1/2 years before that! In 2006 I had a VERY normal looking Brain MRI except for a brite spot & a couple lessor spots 1 was a definate lesion. in 2009 a few more spots that resembled that lesion "Insignificant Lesions"! this one in 2011 has more but also what looks very much like Tuberous Lesions as in MS Tuberous Lesions.
Well, I've told you more than I should have & more than I intended to! I came here for help but as usual I have had the worst of luck!
Good Luck to you all! Oh yeah, YOU'VE had all the luck!
Have to agree here.
Interpreting one's own MRIs is never a good practice. It takes years of training and experience, which no one here has.
Your best bet by far is to ask these questions of your neuro, or maybe the radiologist, if you can see him or her. Second guessing the experts almost never has the desired outcome.
Good luck with this.
ess
Interpreting one's own MRIs is never a good practice. It takes years of training and experience, which no one here has.
Your best bet by far is to ask these questions of your neuro, or maybe the radiologist, if you can see him or her. Second guessing the experts almost never has the desired outcome.
Good luck with this.
ess
Hi, all I know of tuberous lesions is that it's a genetic disease affecting multiple organs in the body. The daughter of a colleague of mine has it and was dx'ed at a very young age. Can I ask why you are trying to interpret your own MRIs? Has a dr not reviewed them with you? I would just be careful with trying to read anything into them, that is of course, unless you are trained to do so. I would save those questions for a neurologist to answer.
Never mind the link, etc. and what I stated about T1 weighted lesions. Your MRI was completed with enhancement--not without. These are newly enhanced lesions which means that they are brand new and active.
I've not had one show up because I've not had them enhance. I'm surprised they were missed because it's pretty clear to me that you have them.
I've not had one show up because I've not had them enhance. I'm surprised they were missed because it's pretty clear to me that you have them.
Here's a web site that has tuberous brain lesion images:
http://emedicine.medscape.com/article/385549-overview
I have had a student with tuberous sclerosis. She had a couple of spots on her brain, too. She does have a learning disability, but other than that, she's perfectly fine. As noted on this site, the severity of the disease varies greatly.
None of my lesions show up on the T1-weighted images. All of my bright spots show up on the FLAIR and T-2 weighted ones. People with MS do get these, though. It is associated with more severe disease activity. See the web site below:
http://radiology.rsna.org/content/244/3/823.full.pdf
http://emedicine.medscape.com/article/385549-overview
I have had a student with tuberous sclerosis. She had a couple of spots on her brain, too. She does have a learning disability, but other than that, she's perfectly fine. As noted on this site, the severity of the disease varies greatly.
None of my lesions show up on the T1-weighted images. All of my bright spots show up on the FLAIR and T-2 weighted ones. People with MS do get these, though. It is associated with more severe disease activity. See the web site below:
http://radiology.rsna.org/content/244/3/823.full.pdf
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