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Stable (sort of) MRI for 6 years?
I am asking this question again, just to see if I can catch anyone else who might know.
Quick background: My mom and cousin have MS. I started having mild sensory symptoms in 2003, and because of my family history, had a brain MRI which showed multiple punctuate white matter lesions, which were reportedly “of concern” for MS or could be vascular disease or migraines. Negative LP, negative VEP, negative blood work. All mimics else ruled out, to my knowledge. I also just had a cervical spine MRI, which came back clean.
Symptoms went away during my first pregnancy, returned after the birth of my son, and then went away during my second pregnancy, and have now returned 8 months postpartum, which to me is a pattern suspicious of MS.
Other possibly relevant symptoms along the way include smoky vision that comes and goes (eye exam fine), two episodes of vertigo that lasted less than a day, bladder problems (possibly due to my 9 ½ pound baby), brain fog (possibly due to postpartum sleep-deprivation), mild difficulty swallowing (thought it was post-nasal drip), and the scariest one to me is heat sensitivity (my sensory symptoms sometimes act up in a hot shower, which I haven’t found any other explanation for).
I have had 2 repeat MRI’s, one in 2007 after my first pregnancy and one about a month ago. They show no new lesions, but the reports say the old lesions appear more prominent, or “brighter” each time (I did not have contrast done, don’t know why, but they didn’t do it any of the 3 times, so it’s not an active/inactive thing). My neuro doesn’t really have an explanation of what this might mean, and without more major symptoms that fit the right pattern I seem to be in limboland.
If this is MS, I want to know so I can start treatment. But I also understand the diagnostic criteria. It is just scary having spots on the brain with no explanation.
My question is if anyone knows what could cause more “prominent” lesions (but no new ones) over time, would that be MS only?
Quick background: My mom and cousin have MS. I started having mild sensory symptoms in 2003, and because of my family history, had a brain MRI which showed multiple punctuate white matter lesions, which were reportedly “of concern” for MS or could be vascular disease or migraines. Negative LP, negative VEP, negative blood work. All mimics else ruled out, to my knowledge. I also just had a cervical spine MRI, which came back clean.
Symptoms went away during my first pregnancy, returned after the birth of my son, and then went away during my second pregnancy, and have now returned 8 months postpartum, which to me is a pattern suspicious of MS.
Other possibly relevant symptoms along the way include smoky vision that comes and goes (eye exam fine), two episodes of vertigo that lasted less than a day, bladder problems (possibly due to my 9 ½ pound baby), brain fog (possibly due to postpartum sleep-deprivation), mild difficulty swallowing (thought it was post-nasal drip), and the scariest one to me is heat sensitivity (my sensory symptoms sometimes act up in a hot shower, which I haven’t found any other explanation for).
I have had 2 repeat MRI’s, one in 2007 after my first pregnancy and one about a month ago. They show no new lesions, but the reports say the old lesions appear more prominent, or “brighter” each time (I did not have contrast done, don’t know why, but they didn’t do it any of the 3 times, so it’s not an active/inactive thing). My neuro doesn’t really have an explanation of what this might mean, and without more major symptoms that fit the right pattern I seem to be in limboland.
If this is MS, I want to know so I can start treatment. But I also understand the diagnostic criteria. It is just scary having spots on the brain with no explanation.
My question is if anyone knows what could cause more “prominent” lesions (but no new ones) over time, would that be MS only?
Thank you, Nancy, for your comments. I really appreciate it, and it does help me feel better. I just feel pain for what she must have gone through, feeling alone (and without Internet friends like this!). But you are right, I can focus on being there for her now. I think I'll go call her... :-)
Hi Laurel. Just wanted to say, don't feel too bad about not having understood what your mom went through. My mother has severe fibromyalgia, and even after she was diagnosed with it in the early 1990s--after having it all her life, no doubt--my four siblings and I--all of whom are intelligent, sympathetic people who love our mom--would still roll our eyes and consider her emotionally weak, always changing her mind about whether she wanted to do something or go someplace, not remembering birthdays and other things, always going to the doctor with some problem, etc.
Not until I had a significant worsening of my daily, low-level dizziness, complete with brain fog and difficulty functioning consistently, did I begin to understand what it means to have a chronic illness or condition. I realized that my brain fog was what she'd been dealing with for decades, not to mention her chronic pain.
Yet my siblings--those loving, smart, sympathetic people--continue to roll their eyes and say (like my mom's sister) that she "enjoys" being sick. They think she is sick partly because she wants to be. They still don't get it! I think you CAN'T understand it until you experience it yourself. So don't feel too guilty, OK? Just be understanding and be there for your mom now--now that you can.
Good luck in figuring out your own symptoms.
Nancy (ten years undiagnosed)
Not until I had a significant worsening of my daily, low-level dizziness, complete with brain fog and difficulty functioning consistently, did I begin to understand what it means to have a chronic illness or condition. I realized that my brain fog was what she'd been dealing with for decades, not to mention her chronic pain.
Yet my siblings--those loving, smart, sympathetic people--continue to roll their eyes and say (like my mom's sister) that she "enjoys" being sick. They think she is sick partly because she wants to be. They still don't get it! I think you CAN'T understand it until you experience it yourself. So don't feel too guilty, OK? Just be understanding and be there for your mom now--now that you can.
Good luck in figuring out your own symptoms.
Nancy (ten years undiagnosed)
Dear Quix,
Thank you so much for your thoughtful response. I truly appreciate the time it took, and I am so sorry your first attempt fell victim to feline trickery. Kitties (and 2-yr-olds) can do that sometimes.
I did get my MRI reports and films since posting my question, so perhaps they would be of interest...I posted the reports in my journal (not wanting to unduly burden anyone with mucking though them here) and once I figure out how to print individual slides of my films, I will post them to my photos, as well. But that might take me a while.
My first guess was the updated machinery/technology, too, but now that you say, "If all or most of the lesions are better seen, than this would be my guess as to why", I am no longer thinking that's the case, because only 2 of the lesions appear more prominent. So, yes, I guess they are true changes. Actually, my neuro originally gave me the impression that I only had 2 lesions, so when he told me after the last MRI, "oh no, there are more than 2", and then I saw the films, I am getting a whole different picture now.
To address another one of your points, my history of symptoms is indeed nonspecific...I've never had anything I could clearly identify as an attack, or even anything that has lasted the required 48 hours (other than the urinary issues). I don't "always have symptoms", but I don't feel like I have a pattern either. It's just some days I may feel tingling in my left hand (can last hours, most of the day, or just minutes), others I don't. One day I may have a numb patch the size of a nickel on my foot, and then I can't really tell if it goes away or if I just get used to it as an area of reduced sensation. My smokey vision may be there one day, or maybe two, then normal again. Some days I feel like I am a walking zombie, kind of the perpetual drunk feeling, and some days I am better. I'll have a day where I lose my train of thought mid-sentence (really embarrassing at work!), have word-fishing, say the wrong words, etc. Then the next I won't have those problems, I still may feel tired, but not complete brain fog. So it's almost like I have the after-effects of an attack, without ever having had an attack, if that makes any sense. And none of it is measurable on exam.
I have had only normal neuro exams, but I don't think I got the full head-to-toe detailing that you describe. He uses the vibrating fork on a few spots, the finger vs. the pin-*****, he has me push back with hands, feet, legs, etc., checks my pupils, has me walk heel/toe, run my heel down my shin, stand with eyes closed, those kinds of things, but the whole thing takes maybe 5 minutes.
I agree with you that most, if not all, of my symptoms can be explained away, but you hit the nail on the head when you said, "In fact, just the fact of "needing" to explain 6 neurologic-sounding symptoms makes me suspicious." I will concede that I am probably being hyper-aware of my body's sensations, just given my mom's MS, but really, all those things? And the pattern of symptom remission during pregnancy and their return postpartum, and the heat sensitivity?
Regarding the MRI strength, I know mine are on a 1.5T machine, and there are no 3T machines in my area. However, I just recently got approved for a 2nd opinion at UCLA, so I am wondering if they could repeat my MRIs on a 3T machine. But my guess is that they are just going to see me one time, look at my history and my films and tell me what they think. I look forward to getting a 2nd opinion read of my MRIs, though, because there are some things I don't understand. For example, on my 2nd scan they note that none of my lesions are periventricular, but in the latest report it says that one of the lesions in the right periventricular white matter is more prominent? Huh?
I also agree with you that, if this is MS, I will have a hard time getting a diagnosis without better evidence, I know this. I feel blessed that I do not have more symptoms, but it is so unnerving have lesions without knowing why and knowing that everything else has been ruled out, and knowing what my Mom went through. I feel so certain that I must be in the very early stages of MS and could prevent further neurological damage by being on a DMD. But I also know that the doctors need to prove that first before I can be on a DMD. If UCLA cannot find enough evidence to diagnose me either, do you think I should just play the wait and see game, as my neuro would have it?
Oh, and to answer your last question, my mom lives in a different city, so no we are not seeing the same neurologist. My mom is on Copaxone and lived for many years with only mild symptoms and few attacks, so that is promising. But unfortunately she is now in a progressive stage and has had a hard time recovering from a hospitalization for pneumonia caused by swallowing difficulty. I just wish I had better understood this disease when I was younger, so I could have been a better support for her. I have a lot of guilt about that, because she hid her emotional and physical struggle from us very well. But the things I know now after learning from this site, I realize she had to deal with a lot of insensitivity by her own family, and that makes me very sad. But, I digress, that is a topic for another time.
Last words, thank you thank you thank you for your help!!!
Feel free to check out my journal (and hopefully eventually my films). And I will keep you posted on my second opinion.
Laurel
Thank you so much for your thoughtful response. I truly appreciate the time it took, and I am so sorry your first attempt fell victim to feline trickery. Kitties (and 2-yr-olds) can do that sometimes.
I did get my MRI reports and films since posting my question, so perhaps they would be of interest...I posted the reports in my journal (not wanting to unduly burden anyone with mucking though them here) and once I figure out how to print individual slides of my films, I will post them to my photos, as well. But that might take me a while.
My first guess was the updated machinery/technology, too, but now that you say, "If all or most of the lesions are better seen, than this would be my guess as to why", I am no longer thinking that's the case, because only 2 of the lesions appear more prominent. So, yes, I guess they are true changes. Actually, my neuro originally gave me the impression that I only had 2 lesions, so when he told me after the last MRI, "oh no, there are more than 2", and then I saw the films, I am getting a whole different picture now.
To address another one of your points, my history of symptoms is indeed nonspecific...I've never had anything I could clearly identify as an attack, or even anything that has lasted the required 48 hours (other than the urinary issues). I don't "always have symptoms", but I don't feel like I have a pattern either. It's just some days I may feel tingling in my left hand (can last hours, most of the day, or just minutes), others I don't. One day I may have a numb patch the size of a nickel on my foot, and then I can't really tell if it goes away or if I just get used to it as an area of reduced sensation. My smokey vision may be there one day, or maybe two, then normal again. Some days I feel like I am a walking zombie, kind of the perpetual drunk feeling, and some days I am better. I'll have a day where I lose my train of thought mid-sentence (really embarrassing at work!), have word-fishing, say the wrong words, etc. Then the next I won't have those problems, I still may feel tired, but not complete brain fog. So it's almost like I have the after-effects of an attack, without ever having had an attack, if that makes any sense. And none of it is measurable on exam.
I have had only normal neuro exams, but I don't think I got the full head-to-toe detailing that you describe. He uses the vibrating fork on a few spots, the finger vs. the pin-*****, he has me push back with hands, feet, legs, etc., checks my pupils, has me walk heel/toe, run my heel down my shin, stand with eyes closed, those kinds of things, but the whole thing takes maybe 5 minutes.
I agree with you that most, if not all, of my symptoms can be explained away, but you hit the nail on the head when you said, "In fact, just the fact of "needing" to explain 6 neurologic-sounding symptoms makes me suspicious." I will concede that I am probably being hyper-aware of my body's sensations, just given my mom's MS, but really, all those things? And the pattern of symptom remission during pregnancy and their return postpartum, and the heat sensitivity?
Regarding the MRI strength, I know mine are on a 1.5T machine, and there are no 3T machines in my area. However, I just recently got approved for a 2nd opinion at UCLA, so I am wondering if they could repeat my MRIs on a 3T machine. But my guess is that they are just going to see me one time, look at my history and my films and tell me what they think. I look forward to getting a 2nd opinion read of my MRIs, though, because there are some things I don't understand. For example, on my 2nd scan they note that none of my lesions are periventricular, but in the latest report it says that one of the lesions in the right periventricular white matter is more prominent? Huh?
I also agree with you that, if this is MS, I will have a hard time getting a diagnosis without better evidence, I know this. I feel blessed that I do not have more symptoms, but it is so unnerving have lesions without knowing why and knowing that everything else has been ruled out, and knowing what my Mom went through. I feel so certain that I must be in the very early stages of MS and could prevent further neurological damage by being on a DMD. But I also know that the doctors need to prove that first before I can be on a DMD. If UCLA cannot find enough evidence to diagnose me either, do you think I should just play the wait and see game, as my neuro would have it?
Oh, and to answer your last question, my mom lives in a different city, so no we are not seeing the same neurologist. My mom is on Copaxone and lived for many years with only mild symptoms and few attacks, so that is promising. But unfortunately she is now in a progressive stage and has had a hard time recovering from a hospitalization for pneumonia caused by swallowing difficulty. I just wish I had better understood this disease when I was younger, so I could have been a better support for her. I have a lot of guilt about that, because she hid her emotional and physical struggle from us very well. But the things I know now after learning from this site, I realize she had to deal with a lot of insensitivity by her own family, and that makes me very sad. But, I digress, that is a topic for another time.
Last words, thank you thank you thank you for your help!!!
Feel free to check out my journal (and hopefully eventually my films). And I will keep you posted on my second opinion.
Laurel
Well, more than 2 weeks after promising you an answer, I am here. Sheesh! Glad I'm not part of a Search and Rescue team. I actually did write an entire epic about 4 nights ago, but when I got up for a break my wily Abbyssinian cat stepped on this special "Back" button on my keyboard and Phhhhtt! it was gone. It broke my spirit. I just couldn't reproduce it that night.
Well, first to answer the question you asked. You say that you have numerous punctate (pinpoint) lesions. From the way you descibed them it sounds like all or most of them have been more prominent in each of the subsequent MRIs done since they were discovered in 2003. (2007 and 2009) If this is the case it is most likely that they are more clearly seen due to changes in the MRI machine, its software (the techniques used in forming the images). Hospitals and imaging centers upgrade their equipment and software whenever financially possible. The technology is constantly improving. Even just an upgrade in the software will cause small lesions to be more highly defined or prominent. If all or most of the lesions are better seen, than this would be my guess as to why.
But, there are other reasons for a lesion to seem more prominent. Typically in MS not all of the lesions that a person has actually grow, at least not all at one time. But, for the sake of argument, there would be nothing that would prevent that from happening. A small, punctate lesion might be at the very limit of the resolution of an MRI machine. The slightest bit of growth would be enough to make it more prominent. So this could be possible, but seems less likely than an improvement in the imaging technology.
You do have an increased likelihood of developing MS, by having a parent (first degree relative) with it. Your history of symptoms is unclear to me. You speak of some sensory stuff, but didn't describe it much. Can MS present only with sensory symptoms? Aboslutely, yes. You also describe the symptoms improving during each of two pregnancies and returning in the postpartum period. This is very suggestive of an immune inflammatory process like MS. I gather you had symptoms before and in between the pregnancies. Do you always have some symptoms or do they completely resolve sometimes?
The symptoms you list are nonspecific. You have "smokey vision that comes and goes." What do you mean by comes and goes? How long do you have it continuously?
The two episodes of vertigo that lasted less than a day, do not count. By definition a relapse of a symptom must last more than 24 hours and many experts are now saying it should be more than 48 hours. That doesn't mean it couldn't be related to MS, but it is not evidence in the history of MS. Dizziness and vertigo are among the most common complaints that adult medicine providers see.
Brain fog is another common and nonspecific symptom. Certainly a large number of moms of little one's complain about it.
Mild difficulty swallowing is another complaint like dizziness. It's a VERY common complaint heard by GPs, Internists, ENTs, GI, and Neuros. It is far more commonly due to something like post-nasal drip. Also the occasional "forgetting how to swallow" is an incredibly common complaint by healthy people. I talked to my neuro about it. His explanation was that swallowing is such a neurologically complex actions, that occasionally the process gets glitched and falis. Usually simply starting over does the trick, unless one becomes anxious about it. Swallowing is something that happens almost subconsciously. Focusing attention on it is very likely to make it more difficult. Trying swallowing while being aware of each sensation. Also try swallowing in slow motion being very aware of the action. Often you can reproduce the difficulty.
Difficult urination post delivery of a 9.5 pound baby??? Maybe so....lol.
And finally, the return of symptoms when heated. That certainly is suggestive of MS, but not exclusive to it. Many neurologic disorders have some element of heat sensitivity.
I'm not trying to explain away your symptoms, but describing them in light of how common they are. In fact, just the fact of "needing" to explain 6 neurologic-sounding symptoms makes me suspicious. Eventually, no matter how common they are, the fact that you have so many should make the docs take note.
The one thing that you didn't mention at all is whether you have any abnormalities on a detailed, thorough neuro exam. Have you had one of these? Just to give you an idea, when my neuro sees me each time he does a head to toe exam. On the muscular strength part alone he tests 18 separate muscle groups on each side - 36 tests in all.
I would give creedence to a clear cervical MRI only if it was done on a 3T machine. The spine is notoriously hard to visualize on MRI and many neuros only trust the 3T exams. I had a normal spinal MRI on a 1.5T and a few weeks later had 6 lesions seen on the 3T.
So, those are my comments about what you have said. Apparently you do not have any new lesions between 2003 and now. Is this possible with MS? There is no reason why not. We know that the MRI can remain stable for a few years. Is there a maximum length of time - not that I have ever read about.
But, if this is MS, you will likely have a hard time getting a diagnosis without any better evidence. On the otherhand, if you have a sufficiently abnormal exam, then then it should be easier. Are you seeing the same neurologist that your mom sees? If not, would it be possible?
I hope this helps,
Quix
Well, first to answer the question you asked. You say that you have numerous punctate (pinpoint) lesions. From the way you descibed them it sounds like all or most of them have been more prominent in each of the subsequent MRIs done since they were discovered in 2003. (2007 and 2009) If this is the case it is most likely that they are more clearly seen due to changes in the MRI machine, its software (the techniques used in forming the images). Hospitals and imaging centers upgrade their equipment and software whenever financially possible. The technology is constantly improving. Even just an upgrade in the software will cause small lesions to be more highly defined or prominent. If all or most of the lesions are better seen, than this would be my guess as to why.
But, there are other reasons for a lesion to seem more prominent. Typically in MS not all of the lesions that a person has actually grow, at least not all at one time. But, for the sake of argument, there would be nothing that would prevent that from happening. A small, punctate lesion might be at the very limit of the resolution of an MRI machine. The slightest bit of growth would be enough to make it more prominent. So this could be possible, but seems less likely than an improvement in the imaging technology.
You do have an increased likelihood of developing MS, by having a parent (first degree relative) with it. Your history of symptoms is unclear to me. You speak of some sensory stuff, but didn't describe it much. Can MS present only with sensory symptoms? Aboslutely, yes. You also describe the symptoms improving during each of two pregnancies and returning in the postpartum period. This is very suggestive of an immune inflammatory process like MS. I gather you had symptoms before and in between the pregnancies. Do you always have some symptoms or do they completely resolve sometimes?
The symptoms you list are nonspecific. You have "smokey vision that comes and goes." What do you mean by comes and goes? How long do you have it continuously?
The two episodes of vertigo that lasted less than a day, do not count. By definition a relapse of a symptom must last more than 24 hours and many experts are now saying it should be more than 48 hours. That doesn't mean it couldn't be related to MS, but it is not evidence in the history of MS. Dizziness and vertigo are among the most common complaints that adult medicine providers see.
Brain fog is another common and nonspecific symptom. Certainly a large number of moms of little one's complain about it.
Mild difficulty swallowing is another complaint like dizziness. It's a VERY common complaint heard by GPs, Internists, ENTs, GI, and Neuros. It is far more commonly due to something like post-nasal drip. Also the occasional "forgetting how to swallow" is an incredibly common complaint by healthy people. I talked to my neuro about it. His explanation was that swallowing is such a neurologically complex actions, that occasionally the process gets glitched and falis. Usually simply starting over does the trick, unless one becomes anxious about it. Swallowing is something that happens almost subconsciously. Focusing attention on it is very likely to make it more difficult. Trying swallowing while being aware of each sensation. Also try swallowing in slow motion being very aware of the action. Often you can reproduce the difficulty.
Difficult urination post delivery of a 9.5 pound baby??? Maybe so....lol.
And finally, the return of symptoms when heated. That certainly is suggestive of MS, but not exclusive to it. Many neurologic disorders have some element of heat sensitivity.
I'm not trying to explain away your symptoms, but describing them in light of how common they are. In fact, just the fact of "needing" to explain 6 neurologic-sounding symptoms makes me suspicious. Eventually, no matter how common they are, the fact that you have so many should make the docs take note.
The one thing that you didn't mention at all is whether you have any abnormalities on a detailed, thorough neuro exam. Have you had one of these? Just to give you an idea, when my neuro sees me each time he does a head to toe exam. On the muscular strength part alone he tests 18 separate muscle groups on each side - 36 tests in all.
I would give creedence to a clear cervical MRI only if it was done on a 3T machine. The spine is notoriously hard to visualize on MRI and many neuros only trust the 3T exams. I had a normal spinal MRI on a 1.5T and a few weeks later had 6 lesions seen on the 3T.
So, those are my comments about what you have said. Apparently you do not have any new lesions between 2003 and now. Is this possible with MS? There is no reason why not. We know that the MRI can remain stable for a few years. Is there a maximum length of time - not that I have ever read about.
But, if this is MS, you will likely have a hard time getting a diagnosis without any better evidence. On the otherhand, if you have a sufficiently abnormal exam, then then it should be easier. Are you seeing the same neurologist that your mom sees? If not, would it be possible?
I hope this helps,
Quix
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