Aa
Follow-up MRIs
I suspect that there's quite a bit of difference in MRI follow-up procedures once you've been diagnosed. I have always had these questions but have, well, fluffed them off because I am already diagnosed. However, I'm questioning myself about whether or not I should be so cavelier.
1a) Do you have a definite diagnosis of MS? If not, does your neuro highly suspect it?
2a) How often do you get follow-up MRIs?
3a) What do you get MRI's of (brain, c-spine, spine, etc.)?
4a) Is contrast used, and do they wait the recommended time before taking the images?
5a) What strength machine is being used?
6a) Have you ever had lesions missed by your radiologist that the neurologist has found? If so, was it several?
7a) Does your neurologist look at the actual images himself?
8a) If you have new or more lesions on your MRI show up, what happened as a result?
There's several questions that I have that stem from these questions:
1b) If you have suspected MS or a definite diagnosis, where are your lesions located (brain, c-spine, spine)?
2b) Do you have a very active disease process? In other words, if you have RRMS, do you have frequent relapses? If chronic progressive MS, PPMS, SPMS, etc., is the disease fast moving or slowly progressing?
3b) ***** My main question***** How important do you think, in your case, that MRIs for follow-up are done of ALL AREAS of the central nervous system? I'm talking follow-up and not the first MRIs.
4b) How important do you think, in your case, that contrast is used and the appropriate wait time for the use of the contrast is implemented?
5b) What would you think if your follow-up MRIs were done on a 1.5T machine? Would you be content with that?
6b & 7b) What would you do if your neuro just reads the radiologists report for follow-up MRIs?
8b) If your neurologist changed your treatment, and if it was ineffective, what options if any are being considered?
These are very tough questions to answer, but I guess the tougheset question in the end for myself when I get your input is: "What are you going to do about it?"
Thank you,
Deb
1a) Do you have a definite diagnosis of MS? If not, does your neuro highly suspect it?
2a) How often do you get follow-up MRIs?
3a) What do you get MRI's of (brain, c-spine, spine, etc.)?
4a) Is contrast used, and do they wait the recommended time before taking the images?
5a) What strength machine is being used?
6a) Have you ever had lesions missed by your radiologist that the neurologist has found? If so, was it several?
7a) Does your neurologist look at the actual images himself?
8a) If you have new or more lesions on your MRI show up, what happened as a result?
There's several questions that I have that stem from these questions:
1b) If you have suspected MS or a definite diagnosis, where are your lesions located (brain, c-spine, spine)?
2b) Do you have a very active disease process? In other words, if you have RRMS, do you have frequent relapses? If chronic progressive MS, PPMS, SPMS, etc., is the disease fast moving or slowly progressing?
3b) ***** My main question***** How important do you think, in your case, that MRIs for follow-up are done of ALL AREAS of the central nervous system? I'm talking follow-up and not the first MRIs.
4b) How important do you think, in your case, that contrast is used and the appropriate wait time for the use of the contrast is implemented?
5b) What would you think if your follow-up MRIs were done on a 1.5T machine? Would you be content with that?
6b & 7b) What would you do if your neuro just reads the radiologists report for follow-up MRIs?
8b) If your neurologist changed your treatment, and if it was ineffective, what options if any are being considered?
These are very tough questions to answer, but I guess the tougheset question in the end for myself when I get your input is: "What are you going to do about it?"
Thank you,
Deb
Responses have varied so much!
The neuo puts most of the weight with the clinical exam and looks to the MRI if needed . . . This is a different way of looking at things . . . I need not be down playing some of the symptoms, then.
Early on, I used to write symptoms down. He used to go over them carefully and decide what looks troublnig. I should get back in the habit of that again.
It's nice to hear about the contrast agent wait time! I don't have to mention this to my neuro.
Thanks again, everyone. Your answers have helped me to refine my approach with my neuro and my role in monitoring/communicating my health.
Deb
The neuo puts most of the weight with the clinical exam and looks to the MRI if needed . . . This is a different way of looking at things . . . I need not be down playing some of the symptoms, then.
Early on, I used to write symptoms down. He used to go over them carefully and decide what looks troublnig. I should get back in the habit of that again.
It's nice to hear about the contrast agent wait time! I don't have to mention this to my neuro.
Thanks again, everyone. Your answers have helped me to refine my approach with my neuro and my role in monitoring/communicating my health.
Deb
Oh, my, Audrey, I did take the topic off-track. I am so sorry. Yes, all of my responses were off topic. You were SO right to ask us to get back to your questions.
Here is my answer to your post.
I was diagnosed in 2007. Since then I have had yearly MRIs of head and either full-spine or just cervical. They have all been done with contrast.
They still fail to show much of anything, in fact, seem to be improving. My neuro has mentioned taking me to every two years unless my clinical status changes.
My neuro and his Nurse Practitioner both read all the MRIs themselves. They often disagree with the radiologist in that they think some "reported lesions" aren't lesions at all. During the diagnostic process my first MS Neuro felt that the radiologist was amiss is dimissing a large brain lesion as a UBO and not suggesting that it might represent demyelination. It was perventricular, ovoid, and was oriented perpendicular to the ventricles - classic for MS.
I spoke to my Neuro about the techs not waiting a longer time before beginning the post-contrast scan. He laughed (he laughs a lot) and said that the small amount of time they waited was completely suffficient. He said there are landmarks that light up when the contrast has had sufficient time, and he checks for these each time. He said that he would scream bloody murder if there was a problem. Clearly he works in close touch with the techs. They know him by name.
My opinion of the need for followup MRIs is that they are done too often. The progression of MS should be followed by looking at the clinical picture. The patient's symptoms and the change in the exam will tell more than an MRI which might not show a new lesion for a new problem. What then? The good clinician will believe the history and the physical anyway.
If the disease is VERY aggressive, tho, it makes sense to check the MRI more frequently, especially if there is a move to a new med which might require more MRI evidence - like an drug trial.
So, you are quite right. Neuro's protocols do vary a lot. I just worry when the docs use the MRI to determine what the patient's experience is. They should be asking the patient and looking at the patient.
Sorry again,
Quix
Here is my answer to your post.
I was diagnosed in 2007. Since then I have had yearly MRIs of head and either full-spine or just cervical. They have all been done with contrast.
They still fail to show much of anything, in fact, seem to be improving. My neuro has mentioned taking me to every two years unless my clinical status changes.
My neuro and his Nurse Practitioner both read all the MRIs themselves. They often disagree with the radiologist in that they think some "reported lesions" aren't lesions at all. During the diagnostic process my first MS Neuro felt that the radiologist was amiss is dimissing a large brain lesion as a UBO and not suggesting that it might represent demyelination. It was perventricular, ovoid, and was oriented perpendicular to the ventricles - classic for MS.
I spoke to my Neuro about the techs not waiting a longer time before beginning the post-contrast scan. He laughed (he laughs a lot) and said that the small amount of time they waited was completely suffficient. He said there are landmarks that light up when the contrast has had sufficient time, and he checks for these each time. He said that he would scream bloody murder if there was a problem. Clearly he works in close touch with the techs. They know him by name.
My opinion of the need for followup MRIs is that they are done too often. The progression of MS should be followed by looking at the clinical picture. The patient's symptoms and the change in the exam will tell more than an MRI which might not show a new lesion for a new problem. What then? The good clinician will believe the history and the physical anyway.
If the disease is VERY aggressive, tho, it makes sense to check the MRI more frequently, especially if there is a move to a new med which might require more MRI evidence - like an drug trial.
So, you are quite right. Neuro's protocols do vary a lot. I just worry when the docs use the MRI to determine what the patient's experience is. They should be asking the patient and looking at the patient.
Sorry again,
Quix
We got completely off topic with this post. Would love to see answers to the original post.
If there are enough people concerned about DMDs who wish to introduce that as a separate topic, I'd like to see that as another post.
No disrespect intended.
Audrey
If there are enough people concerned about DMDs who wish to introduce that as a separate topic, I'd like to see that as another post.
No disrespect intended.
Audrey
Hi, Pablo, I didn't mean to imply that Copaxone was a toxin. I was just commenting that the Interferons were not. Copaxone also has a 22 year history with a lot of study of how people do on it. Apart from the injection site reactions and some "lipoatrophy" (dents in the skin where the subcutaneous fat has atrohpied and left a dent) there is no evidence that you are injecting a toxin.
Copaxone is a mixture of proteins which come from sections of the myelin sheath. The hope is that the med gives the antibodies which may be attacking the nerves another target.
No, there is no evidence in 22 years that Copaxone is toxic. The subcutaneous tissue, though, does react to it as an irritant in some people. It is considered the safest of all the DMDs.
Jemm - the side effects of the med are the same side effects seen when Interferon beta is made in the body in large amounts in response to a serious viral infection. The achiness, fever, stiffness and such that you suffer with the flu are a result of the Interferon being made by your own immune system, like I said above. When you feel so raunchy in the first day or so of a bad cold, the achiness, headache and fever are caused by the interferons. The sorethroat, runny nose, sneezing, cough are caused by damage to the nose, thrat and lungs by the virus same for the flu.
I would never try to tell anyone that there may not be some reversible consequences to taking an interferon med. Because it is used in higher doses then is made naturally by the immune system, you can rarely see elevations in liver enzymes, effects on the bone marrow and depression. All of these go away with removal of the med. But, all those things can happen with a viral infection also. Many viruses cause a mild, transient hepatitis. Many, like the Parvo virus can cause significant depression of the bone marrow. In fact, one of the ways we diagnose someone with a viral infection is that the White Cell Count is depressed. And many viruses (like EBV, Hepatitis A, Influenza can cause a severe post-viral depression), and many of the meds we use for symptomatic treatment of our MS can cause depression - especially the benzodiazepines like valium, ativan, clonazepam.
My point is that we are not immune from these side effects because we don't take the meds. They are common occurences in life.
quix
Copaxone is a mixture of proteins which come from sections of the myelin sheath. The hope is that the med gives the antibodies which may be attacking the nerves another target.
No, there is no evidence in 22 years that Copaxone is toxic. The subcutaneous tissue, though, does react to it as an irritant in some people. It is considered the safest of all the DMDs.
Jemm - the side effects of the med are the same side effects seen when Interferon beta is made in the body in large amounts in response to a serious viral infection. The achiness, fever, stiffness and such that you suffer with the flu are a result of the Interferon being made by your own immune system, like I said above. When you feel so raunchy in the first day or so of a bad cold, the achiness, headache and fever are caused by the interferons. The sorethroat, runny nose, sneezing, cough are caused by damage to the nose, thrat and lungs by the virus same for the flu.
I would never try to tell anyone that there may not be some reversible consequences to taking an interferon med. Because it is used in higher doses then is made naturally by the immune system, you can rarely see elevations in liver enzymes, effects on the bone marrow and depression. All of these go away with removal of the med. But, all those things can happen with a viral infection also. Many viruses cause a mild, transient hepatitis. Many, like the Parvo virus can cause significant depression of the bone marrow. In fact, one of the ways we diagnose someone with a viral infection is that the White Cell Count is depressed. And many viruses (like EBV, Hepatitis A, Influenza can cause a severe post-viral depression), and many of the meds we use for symptomatic treatment of our MS can cause depression - especially the benzodiazepines like valium, ativan, clonazepam.
My point is that we are not immune from these side effects because we don't take the meds. They are common occurences in life.
quix
Quix,
Should we then think of Copaxone as a 'toxin'? I'm injecting this thing daily with the expectation that it won't cause more trouble than benefits! (So far I feel it's been beneficial, though it's hard to guess since we can never take both med and un-med paths at the same time, right??)
Should we then think of Copaxone as a 'toxin'? I'm injecting this thing daily with the expectation that it won't cause more trouble than benefits! (So far I feel it's been beneficial, though it's hard to guess since we can never take both med and un-med paths at the same time, right??)
Interferons are produced naturally by our bodies. When certain infections strike, interferons rev up to fight them. Unfortunately, that can mean headaches and other body aches, not to mention fever, etc. So it's a good news/bad news scenario.
That's why the interferon DMDs have the side effects they do. Luckily, over-the-counter drugs such as ibuprofens can counter these effects, sometimes totally.
If you have effects from many drugs, that's really unfortunate. It doesn't mean, though, that MS DMDs would cause problems for you, or that they are toxic.
ess
That's why the interferon DMDs have the side effects they do. Luckily, over-the-counter drugs such as ibuprofens can counter these effects, sometimes totally.
If you have effects from many drugs, that's really unfortunate. It doesn't mean, though, that MS DMDs would cause problems for you, or that they are toxic.
ess
Well, sorry, I guess a poor choice of words on my part. The side effects listed and repeatedly experienced in here don't help convince me though! I tend to ahve very bad reactions to drugs ( I can't even have codeine without having a seizure) so am extremely dubious about trying ANYTHING.
A question though: if the, for example, betaferons, are "natural", why so many side effects?
A question though: if the, for example, betaferons, are "natural", why so many side effects?
I too want to emphasize that the DMDs are not toxic. I would hate anyone to decide against one of them based on this incorrect information.
ess
ess
Jemm - you always refer to the MS meds as toxins. I think that is misinformed. Why do you never refer to the process going on inside your brain and spine as toxic also? But, beyond that, if you consider that the body, itself, makes Interferons INDENTICAL TO THE ONES IN Avonex, Rebif and Betaseron - how can they be viewed as toxins? Is it because they have side effects? The interferons that are produced by our own immune system have the same effects as the meds. The symptoms of having influenza are largely due to the interferons produced by our immune systems in response to the viral infection.
You can view the statistics however you want. I admit that 30% to 40% is not a very promising percentage. I would hope for a fairly natural med that help more consistently. But, when you opt out of using a med for that reason, it makes sense to compare the chances that you will win the wager and end up "better off" which I assume is the end result we would all want.
Best result with the meds: You have a 1 in 3 chance of improving/stabilizing with the meds (which are biologically natural, except for Copaxone). The Interferon Meds just use them at higher doses.
Best result with taking your chances on the disease: You have a 1 in 8 chance of having a permanently benign course with the MS. Consistently only 12% to 15% of all people with MS have a Benign Course throughout their lives. The other 85% to 88% will progress to disability.
I throw this out not to knock your decision, which is not an uncommon one, but to point out to others that read your comments that 1) The interferons are not "toxins", but are "biologically natural" (your own body makes them in good measure on a fairly frequent basis) and 2) your chances of having real damage from a disease left untreated are much higher than they are of not having improvement with the meds.
When we discard one path in a dilemma, we should be sure to at least be aware of what the other path has in store for us. And it is human nature to feel that we will always escape the bad outcome.
Just another way to view the odds we face.
Quix
You can view the statistics however you want. I admit that 30% to 40% is not a very promising percentage. I would hope for a fairly natural med that help more consistently. But, when you opt out of using a med for that reason, it makes sense to compare the chances that you will win the wager and end up "better off" which I assume is the end result we would all want.
Best result with the meds: You have a 1 in 3 chance of improving/stabilizing with the meds (which are biologically natural, except for Copaxone). The Interferon Meds just use them at higher doses.
Best result with taking your chances on the disease: You have a 1 in 8 chance of having a permanently benign course with the MS. Consistently only 12% to 15% of all people with MS have a Benign Course throughout their lives. The other 85% to 88% will progress to disability.
I throw this out not to knock your decision, which is not an uncommon one, but to point out to others that read your comments that 1) The interferons are not "toxins", but are "biologically natural" (your own body makes them in good measure on a fairly frequent basis) and 2) your chances of having real damage from a disease left untreated are much higher than they are of not having improvement with the meds.
When we discard one path in a dilemma, we should be sure to at least be aware of what the other path has in store for us. And it is human nature to feel that we will always escape the bad outcome.
Just another way to view the odds we face.
Quix
1a) Do you have a definite diagnosis of MS? If not, does your neuro highly suspect it?
Highly suspect. And to quote him, "I can't think of anything else it could be"
2a) How often do you get follow-up MRIs?
I just had one. I've had 3 in 2 years.
3a) What do you get MRI's of (brain, c-spine, spine, etc.)?
First one was just brain. Second brain and full spine. Last one brain and c-spine.
4a) Is contrast used, and do they wait the recommended time before taking the images?
No contrast used.
5a) What strength machine is being used?
1st they used a 1.5. Second was 3. 3rd time they used a 1.5 to compare to the original MRI (also because the 2nd MRI films were interstate and inaccessible)
6a) Have you ever had lesions missed by your radiologist that the neurologist has found? If so, was it several?
yes, heaps.
7a) Does your neurologist look at the actual images himself?
Yes
8a) If you have new or more lesions on your MRI show up, what happened as a result?
n/a
1b) If you have suspected MS or a definite diagnosis, where are your lesions located (brain, c-spine, spine)?
None in the spine. None in brain stem. Too many to count in periventricular areas. 3 in cerebellum.
2b) Do you have a very active disease process? In other words, if you have RRMS, do you have frequent relapses? If chronic progressive MS, PPMS, SPMS, etc., is the disease fast moving or slowly progressing?
They haven't decided what I have yet. But it's been very busy this year.
3b) ***** My main question***** How important do you think, in your case, that MRIs for follow-up are done of ALL AREAS of the central nervous system? I'm talking follow-up and not the first MRIs.
I don't know from the neuro's perspective, but I know from mine I was very keen to see how much more damage was occurring. I see my neuro tomorrow to discuss the latest results.
4b) How important do you think, in your case, that contrast is used and the appropriate wait time for the use of the contrast is implemented?
haven't had contrast used. I am tired of having needles shoved into me and object to anything like that unless it's life-saving.
5b) What would you think if your follow-up MRIs were done on a 1.5T machine? Would you be content with that?
it was, so it doesn't bother me, and seeing as i have so many lesions clearly visible on a 1.5 I expect if I saw the results on a 3 I would get a fright!
6b & 7b) What would you do if your neuro just reads the radiologists report for follow-up MRIs?
Say, "Oi, you, check the films!" well maybe not, but I'd drag them out and say, "Can you please explain THIS" and point to something thus forcing his hand. HA
8b) If your neurologist changed your treatment, and if it was ineffective, what options if any are being considered?
I'm obstinate and have yet to go on any drugs. I am not convinced that 30% reduction is relapsed is enough for me to stab myself with toxins on a daily basis.
Highly suspect. And to quote him, "I can't think of anything else it could be"
2a) How often do you get follow-up MRIs?
I just had one. I've had 3 in 2 years.
3a) What do you get MRI's of (brain, c-spine, spine, etc.)?
First one was just brain. Second brain and full spine. Last one brain and c-spine.
4a) Is contrast used, and do they wait the recommended time before taking the images?
No contrast used.
5a) What strength machine is being used?
1st they used a 1.5. Second was 3. 3rd time they used a 1.5 to compare to the original MRI (also because the 2nd MRI films were interstate and inaccessible)
6a) Have you ever had lesions missed by your radiologist that the neurologist has found? If so, was it several?
yes, heaps.
7a) Does your neurologist look at the actual images himself?
Yes
8a) If you have new or more lesions on your MRI show up, what happened as a result?
n/a
1b) If you have suspected MS or a definite diagnosis, where are your lesions located (brain, c-spine, spine)?
None in the spine. None in brain stem. Too many to count in periventricular areas. 3 in cerebellum.
2b) Do you have a very active disease process? In other words, if you have RRMS, do you have frequent relapses? If chronic progressive MS, PPMS, SPMS, etc., is the disease fast moving or slowly progressing?
They haven't decided what I have yet. But it's been very busy this year.
3b) ***** My main question***** How important do you think, in your case, that MRIs for follow-up are done of ALL AREAS of the central nervous system? I'm talking follow-up and not the first MRIs.
I don't know from the neuro's perspective, but I know from mine I was very keen to see how much more damage was occurring. I see my neuro tomorrow to discuss the latest results.
4b) How important do you think, in your case, that contrast is used and the appropriate wait time for the use of the contrast is implemented?
haven't had contrast used. I am tired of having needles shoved into me and object to anything like that unless it's life-saving.
5b) What would you think if your follow-up MRIs were done on a 1.5T machine? Would you be content with that?
it was, so it doesn't bother me, and seeing as i have so many lesions clearly visible on a 1.5 I expect if I saw the results on a 3 I would get a fright!
6b & 7b) What would you do if your neuro just reads the radiologists report for follow-up MRIs?
Say, "Oi, you, check the films!" well maybe not, but I'd drag them out and say, "Can you please explain THIS" and point to something thus forcing his hand. HA
8b) If your neurologist changed your treatment, and if it was ineffective, what options if any are being considered?
I'm obstinate and have yet to go on any drugs. I am not convinced that 30% reduction is relapsed is enough for me to stab myself with toxins on a daily basis.
Rita, Thank you--you've given me a lot to think about!
I love my neurologist, but this has me thinking that I should somehow, without coming across as questioning his judgement, get my neurologist to look at the MRIs again with me. He used to, but then has gotten really, really busy. Usually, there's at least a two hour wait! He has found lesions on my MRI that were not noted at all by the radiologist. When he pointed them out, I saw the spots, and there were lots of them. None of them were noted by the radiologist except for one, and they continue not to be noted in any of the reports. I already mentioned the contrast issue. So, in a nutshell, I wonder why I am getting MRIs in the first place!
Maybe he's gadging the symptoms I'm having with whether or not he pulls me into the office to look the MRI. I do think I may be down-playing my symptoms. Sometimes, I forget them altogether between visits! Same on me, I know! I should write them down, but I think that I'm not as motivated in doing this because I am already diagnosed.
Lately, I'm thinking my plan is not so good (down-playing symptoms, etc.). I have noticed new symptoms that, frankly, have me concerned! One is very concerning and the other symptom I've been complaining about for a while but never really put the emotion into describing it that the problem deserves! That is the memory issue.
I've mentioned this, but I never told him of how it is impacting my life. It is BAD! I have had many embarrasing moments as the result at work, and I don't want to lose my job or have a bad evaluation as the result. I am such a people pleaser, and having someone telling me that I'm not up to snuff really does impact me. I put 100% of my best effort into my work.
I am also noticing way more numbness. I question myself if it's normal or not. I know that sounds silly, but most of the time the numbness occurs when I have been sitting for several minutes or my arm is in a certain spot to cause it. Don't giggle! I hear how ridiculous I'm sounding . . . LOL
Some symptoms, although very severe sounding, never get mentioned because they are on and off again for a few days and then gone. I think, "Oh they're done with", only to find them reoccur a month or so after my appointment. The gasping for air when sleeping problem is a good example of that one.
Other symptoms I chalk up to lack of sleep, etc. etc. I usually don't attribute the symptom to MS. I always have a little bit of denial going on, I guess. When I got the radiologist report, I started doubting my MS diagnosis! I did see the lesions when the neurologist pointed them out, but the MRI report by the radiologist, has only showed one lesion that could be demyelinating (according to the report)!
My mind is just twirling (is this an MS symptoms? LOL)! I am going to have to find a way to mention to my neuro my concerns about the MRIs, etc. without offending him.
My complaints make him sound like he's the worst neuro in the world, but this is the furthest from the truth. I DO NOT want to change neuros. I welcome any suggestions.
Thanks a million,
Deb
I love my neurologist, but this has me thinking that I should somehow, without coming across as questioning his judgement, get my neurologist to look at the MRIs again with me. He used to, but then has gotten really, really busy. Usually, there's at least a two hour wait! He has found lesions on my MRI that were not noted at all by the radiologist. When he pointed them out, I saw the spots, and there were lots of them. None of them were noted by the radiologist except for one, and they continue not to be noted in any of the reports. I already mentioned the contrast issue. So, in a nutshell, I wonder why I am getting MRIs in the first place!
Maybe he's gadging the symptoms I'm having with whether or not he pulls me into the office to look the MRI. I do think I may be down-playing my symptoms. Sometimes, I forget them altogether between visits! Same on me, I know! I should write them down, but I think that I'm not as motivated in doing this because I am already diagnosed.
Lately, I'm thinking my plan is not so good (down-playing symptoms, etc.). I have noticed new symptoms that, frankly, have me concerned! One is very concerning and the other symptom I've been complaining about for a while but never really put the emotion into describing it that the problem deserves! That is the memory issue.
I've mentioned this, but I never told him of how it is impacting my life. It is BAD! I have had many embarrasing moments as the result at work, and I don't want to lose my job or have a bad evaluation as the result. I am such a people pleaser, and having someone telling me that I'm not up to snuff really does impact me. I put 100% of my best effort into my work.
I am also noticing way more numbness. I question myself if it's normal or not. I know that sounds silly, but most of the time the numbness occurs when I have been sitting for several minutes or my arm is in a certain spot to cause it. Don't giggle! I hear how ridiculous I'm sounding . . . LOL
Some symptoms, although very severe sounding, never get mentioned because they are on and off again for a few days and then gone. I think, "Oh they're done with", only to find them reoccur a month or so after my appointment. The gasping for air when sleeping problem is a good example of that one.
Other symptoms I chalk up to lack of sleep, etc. etc. I usually don't attribute the symptom to MS. I always have a little bit of denial going on, I guess. When I got the radiologist report, I started doubting my MS diagnosis! I did see the lesions when the neurologist pointed them out, but the MRI report by the radiologist, has only showed one lesion that could be demyelinating (according to the report)!
My mind is just twirling (is this an MS symptoms? LOL)! I am going to have to find a way to mention to my neuro my concerns about the MRIs, etc. without offending him.
My complaints make him sound like he's the worst neuro in the world, but this is the furthest from the truth. I DO NOT want to change neuros. I welcome any suggestions.
Thanks a million,
Deb
Hiya ... those are all really good questions! Made me think alot for this early in the day, lol. I'll answer them the way you broke them down:
1a.) I have a definite diagnosis of RRMS.
2a.) I get follow up MRI's every 6 months, because I am on Tysabri and have another
weird area in my brain and they like to watch me pretty closely. Also get MRI's in
between if my neuro has any questions about anything.
3a.) I only get follow up scans of my brain. I had the initial scans of the C and T spine,
but don't get them each time because the results would not change my treatment
plan.
4a.) Contrast is used each time, and I assume they wait the recommended amount of
time after injection to do the next series of films. I know that my neuro has it
already set up with the MRI dept to have them do just what he wants with the
scans when he orders an MS protocol.
5a.) All my scans are done on a 1.5T closed bore magnet, at the hospital that my
neuro is affiliated with.
6a.) I have not had any lesions missed by a radiologist, but on my initial scans, the
radiologist down played the lesions I had, whereas the neuro felt they were very
important in context of my history and the results of his in office clinical exam.
7a.) My neuro ALWAYS reads the films himself. He is largely unconcerned with
whatever the radiologist has to say.
8a.) I did have a new lesion show up last year in my corpus callosum (classic for MS),
but it did not change anything we were doing treatment wise, since I'm already on
Tysabri.
1b.) My few lesions are all in my brain. On the initial spine MRI's, no lesions showed
there, but my neuro said we KNOW I have lesions there, based on my symptoms.
Just because they didn't show on the MRI doesn't mean they aren't there. Spinal
lesions are notoriously difficult to pick up.
2b.) I don't tend to have dramatic relapses and remissions - more like continual
problems with new issues cropping up along the way. But I can always tell
when something is starting up, because the fatigue and the balance issues will
suddenly worsen.
3b.) In my case, I'm not too concerned about follow up scans being done of my spine,
since the results one way or another wouldn't change my treatment plan at this
point - it's more of a curiosity factor. I think the follow up scans of my brain, on
the other hand, are VERY important. There is so much going on with me, it is a
comfort to know my neuro keeps such a close eye on me. In addition to the brain
MRI's, I have an office visit with him every 3 months, plus I see him every month
when he starts the IV for my Tysabri. It's nice to have those few minutes of face
time with him, where I can tell him anything that's going on with me, and just touch
base with him.
4b.) Coming from a career in medical imaging, I can tell you that it is VERY important
for contrast to be used when looking for MS, and also that it is very important
for the proper timing of scans after injection of the contrast. Ideally, the place
you go for your scans will be familiar with your neuro, and will know exactly what
sequences he wants, how much contrast he wants, and the timing of the post
contrast scans.
5b.) All my scans are done on a 1.5T magnet - in my particular case, I am very content
with that. I am alrady diagnosed and on a DMD, so even if I got a scan on a 3T
and it showed even more lesions (which it probably would), we would do nothing
different right now, so it's kind of a moot point. But in someone who does not
have a firm diagnosis, the difference could be very important. Kind of depends
on the situation and the neuro's philosophy for treating.
6b. and 7b.) If my neuro just read the radiologist's report and did not look at the films
himself, I would find a new neuro. I spent 25 yrs in medical imaging - I can tell
you that when the radiologist reads the films, they have very little information
about the patient - pretty much just what the referring doc has put on the request
and whatever the patient might add at the time of the scan. So the radiologist
sees that one piece of the puzzle. The neuro on the other hand will look at those
films from a different perspective, because he has ALL the pieces of the puzzle.
*******What may seem relatively insignificant to the radiologist, may, in fact, be very
significant to the neuro, when put into contex of the patient's symptoms, history
clinical exam.
In my particular case, I have never had alot of lesions, and on my initial scan,
they were downplayed by the radiologist - who is a VERY GOOD radiologist, and
who I hand picked to read the films. But when my neuro looked at the films, he
felt those lesions were definitely MS lesions, because of where they were
located and the rest of my whole clinical picture.
8b.) My initial treatment upon diagnosis was Rebif, but at my 6 month checkup, my
neuro felt it was not working and that things were advancing and he was very
concerned. That's when he brought up Tysabri, which totally knocked me for
a loop. I have now had 25 treatments of Tysabri, and we have no plans to
change treatment at this point, even tho I have gone over the 2 yr mark. We both
feel this is the best thing out there for me at this point, and that the risk of
the MS is worse than the risk of the medication right now. BUT, it is an issue
we are always discussing and re-evaluating.
Hope this helps, Deb... :-)
Rita
P.S. - I promise I'll answer your PM soon!!
1a.) I have a definite diagnosis of RRMS.
2a.) I get follow up MRI's every 6 months, because I am on Tysabri and have another
weird area in my brain and they like to watch me pretty closely. Also get MRI's in
between if my neuro has any questions about anything.
3a.) I only get follow up scans of my brain. I had the initial scans of the C and T spine,
but don't get them each time because the results would not change my treatment
plan.
4a.) Contrast is used each time, and I assume they wait the recommended amount of
time after injection to do the next series of films. I know that my neuro has it
already set up with the MRI dept to have them do just what he wants with the
scans when he orders an MS protocol.
5a.) All my scans are done on a 1.5T closed bore magnet, at the hospital that my
neuro is affiliated with.
6a.) I have not had any lesions missed by a radiologist, but on my initial scans, the
radiologist down played the lesions I had, whereas the neuro felt they were very
important in context of my history and the results of his in office clinical exam.
7a.) My neuro ALWAYS reads the films himself. He is largely unconcerned with
whatever the radiologist has to say.
8a.) I did have a new lesion show up last year in my corpus callosum (classic for MS),
but it did not change anything we were doing treatment wise, since I'm already on
Tysabri.
1b.) My few lesions are all in my brain. On the initial spine MRI's, no lesions showed
there, but my neuro said we KNOW I have lesions there, based on my symptoms.
Just because they didn't show on the MRI doesn't mean they aren't there. Spinal
lesions are notoriously difficult to pick up.
2b.) I don't tend to have dramatic relapses and remissions - more like continual
problems with new issues cropping up along the way. But I can always tell
when something is starting up, because the fatigue and the balance issues will
suddenly worsen.
3b.) In my case, I'm not too concerned about follow up scans being done of my spine,
since the results one way or another wouldn't change my treatment plan at this
point - it's more of a curiosity factor. I think the follow up scans of my brain, on
the other hand, are VERY important. There is so much going on with me, it is a
comfort to know my neuro keeps such a close eye on me. In addition to the brain
MRI's, I have an office visit with him every 3 months, plus I see him every month
when he starts the IV for my Tysabri. It's nice to have those few minutes of face
time with him, where I can tell him anything that's going on with me, and just touch
base with him.
4b.) Coming from a career in medical imaging, I can tell you that it is VERY important
for contrast to be used when looking for MS, and also that it is very important
for the proper timing of scans after injection of the contrast. Ideally, the place
you go for your scans will be familiar with your neuro, and will know exactly what
sequences he wants, how much contrast he wants, and the timing of the post
contrast scans.
5b.) All my scans are done on a 1.5T magnet - in my particular case, I am very content
with that. I am alrady diagnosed and on a DMD, so even if I got a scan on a 3T
and it showed even more lesions (which it probably would), we would do nothing
different right now, so it's kind of a moot point. But in someone who does not
have a firm diagnosis, the difference could be very important. Kind of depends
on the situation and the neuro's philosophy for treating.
6b. and 7b.) If my neuro just read the radiologist's report and did not look at the films
himself, I would find a new neuro. I spent 25 yrs in medical imaging - I can tell
you that when the radiologist reads the films, they have very little information
about the patient - pretty much just what the referring doc has put on the request
and whatever the patient might add at the time of the scan. So the radiologist
sees that one piece of the puzzle. The neuro on the other hand will look at those
films from a different perspective, because he has ALL the pieces of the puzzle.
*******What may seem relatively insignificant to the radiologist, may, in fact, be very
significant to the neuro, when put into contex of the patient's symptoms, history
clinical exam.
In my particular case, I have never had alot of lesions, and on my initial scan,
they were downplayed by the radiologist - who is a VERY GOOD radiologist, and
who I hand picked to read the films. But when my neuro looked at the films, he
felt those lesions were definitely MS lesions, because of where they were
located and the rest of my whole clinical picture.
8b.) My initial treatment upon diagnosis was Rebif, but at my 6 month checkup, my
neuro felt it was not working and that things were advancing and he was very
concerned. That's when he brought up Tysabri, which totally knocked me for
a loop. I have now had 25 treatments of Tysabri, and we have no plans to
change treatment at this point, even tho I have gone over the 2 yr mark. We both
feel this is the best thing out there for me at this point, and that the risk of
the MS is worse than the risk of the medication right now. BUT, it is an issue
we are always discussing and re-evaluating.
Hope this helps, Deb... :-)
Rita
P.S. - I promise I'll answer your PM soon!!
The lesions my neurologist found in my corpus callosum, not mentioned by the radiologist in the report BTW, was what my neurologist told me was why he was certain I had a demyelinating disease. I can most definitely see why you want to seek a second opinion on the brain lesions. Will you be seeking an opinion from an MS specialist or a different radiologist?
Hmmmm . . . I also learned something about the contrast. I didn't know about the risks with the contrast material. I wonder why I even get this contrast material that has risks if the rad. tech. waits after getting the IV of the gad in my veins just long enough for her to run to the control panel to start the next imaging. This has me wondering . . .
Thank you!
Deb
Hmmmm . . . I also learned something about the contrast. I didn't know about the risks with the contrast material. I wonder why I even get this contrast material that has risks if the rad. tech. waits after getting the IV of the gad in my veins just long enough for her to run to the control panel to start the next imaging. This has me wondering . . .
Thank you!
Deb
Excellent questions. I’ve tried to combine your 2 part questions and address them both in the same place. Will be curious to see the response.
1) Do you have a definite diagnosis of MS? If not, does your neuro highly suspect it?
I am not dx’d. Neuro says lesions are not typical of MS. I have them only in the brain; at least 14. Two juxtacortical lesions, two lesions in the corpus callosum and 6 periventricular lesions.
2) How often do you get follow-up MRIs?
Right now every 6 months. Whatever is taking place in my body seems to be progressing slowly, however there has been a significant decline in the past three years.
3) What do you get MRI's of (brain, c-spine, spine, etc.)?
Repeat MRIs have been of the brain and C spine (C spine was 3 month follow up due to lack of clarity of images with 1st). My gut says that follow up MRIs of the brain should be done on a regular basis, but not necessarily on the spine due to the degree of difficulty in detecting spinal lesions. Just thinking on a logical basis, so my thought would be if sx worsened without a corresponding change in the brain, it would make sense to revisit the spine.
4) Is contrast used, and do they wait the recommended time before taking the images?
Contrast was used on the first several, but not of the 6 month follow up brain imaging. As COBOB pointed out, this was probably due to the fact that there had been recent imaging and risks of contrast material to the kidneys probably outweighed any benefits in using it. If new lesions appeared, then it is probably safe to infer they were active at some point in the six month interval?
5) What strength machine is being used?
I have not been able to get an answer on this. I believe that they have been done on a T 1.5 machine and would be more comfortable with a T 2 machine.
6) Have you ever had lesions missed by your radiologist that the neurologist has found? If so, was it several?
Yes, one to my knowledge.
7) Does your neurologist look at the actual images himself?
Yes. I recently found out that the radiologist marks up the images as a guide for the doctor , so that the films we see are not highlighted like those seen by the doctor. If I had a specialist who relied only on the radiologist’s report, I would be looking for another doctor.
8) If you have new or more lesions on your MRI show up, what happened as a result?
Nothing! Neuro insists that my lesions are not classic MS lesions and is more concerned with my cervical spine. I asked her to outline a plan as far as the brain lesions and sx that cannot be attributed to the spinal cord, without success, except for a follow up MRI in another 6 months. I have had to push her, and am now being referred to a spine group and will seek a second opinion on the brain lesions.
Audrey
1) Do you have a definite diagnosis of MS? If not, does your neuro highly suspect it?
I am not dx’d. Neuro says lesions are not typical of MS. I have them only in the brain; at least 14. Two juxtacortical lesions, two lesions in the corpus callosum and 6 periventricular lesions.
2) How often do you get follow-up MRIs?
Right now every 6 months. Whatever is taking place in my body seems to be progressing slowly, however there has been a significant decline in the past three years.
3) What do you get MRI's of (brain, c-spine, spine, etc.)?
Repeat MRIs have been of the brain and C spine (C spine was 3 month follow up due to lack of clarity of images with 1st). My gut says that follow up MRIs of the brain should be done on a regular basis, but not necessarily on the spine due to the degree of difficulty in detecting spinal lesions. Just thinking on a logical basis, so my thought would be if sx worsened without a corresponding change in the brain, it would make sense to revisit the spine.
4) Is contrast used, and do they wait the recommended time before taking the images?
Contrast was used on the first several, but not of the 6 month follow up brain imaging. As COBOB pointed out, this was probably due to the fact that there had been recent imaging and risks of contrast material to the kidneys probably outweighed any benefits in using it. If new lesions appeared, then it is probably safe to infer they were active at some point in the six month interval?
5) What strength machine is being used?
I have not been able to get an answer on this. I believe that they have been done on a T 1.5 machine and would be more comfortable with a T 2 machine.
6) Have you ever had lesions missed by your radiologist that the neurologist has found? If so, was it several?
Yes, one to my knowledge.
7) Does your neurologist look at the actual images himself?
Yes. I recently found out that the radiologist marks up the images as a guide for the doctor , so that the films we see are not highlighted like those seen by the doctor. If I had a specialist who relied only on the radiologist’s report, I would be looking for another doctor.
8) If you have new or more lesions on your MRI show up, what happened as a result?
Nothing! Neuro insists that my lesions are not classic MS lesions and is more concerned with my cervical spine. I asked her to outline a plan as far as the brain lesions and sx that cannot be attributed to the spinal cord, without success, except for a follow up MRI in another 6 months. I have had to push her, and am now being referred to a spine group and will seek a second opinion on the brain lesions.
Audrey
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