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Multiple Sclerosis remains in the differential diagnosis. Confused!
I've heard of this differential diagnosis before, but can't find any info at Medhelp that relates to my situation. I got another brain MRI on Friday and have the results here with me, and the spelling is absolutely horrible! I'm hoping to get some help and opinions on what this means, and what to do, because it appears that I have this dang disease, but I'm unable to get any treatment, because I can't find a Neuro to agree with the radiologists. I'm told my lesions are from migraines. STILL! Years! I don't have them, and everything else has been ruled out.
MRI results summed up: (Their spelling, not mine!)
There a few non-specific T2 FLAIR foci periventricular subcortical white matter which are stable from prior study.These foci are non-enhancing and are imperceptible on T1. Although non-specific, these foci could be consistent with provided history of multiple sclerosis.
This and that is unremarkable and blah, blah, blah.
Impression: Stable MRI the brain with nonspecific T2 FLAIR foci and paratracheal subcortical white matter. These foci do not meet imaging criteria for multiple sclerosis however, multiple sclerosis remains in the differential diagnosis. There are no new, enhancing, or diffusion positive foci seen.
Differential diagnosis? Can someone help me understand, please? Thank you!
MRI results summed up: (Their spelling, not mine!)
There a few non-specific T2 FLAIR foci periventricular subcortical white matter which are stable from prior study.These foci are non-enhancing and are imperceptible on T1. Although non-specific, these foci could be consistent with provided history of multiple sclerosis.
This and that is unremarkable and blah, blah, blah.
Impression: Stable MRI the brain with nonspecific T2 FLAIR foci and paratracheal subcortical white matter. These foci do not meet imaging criteria for multiple sclerosis however, multiple sclerosis remains in the differential diagnosis. There are no new, enhancing, or diffusion positive foci seen.
Differential diagnosis? Can someone help me understand, please? Thank you!
Nickie: I understand your frustration. I've never been yelled at (except by a PCP), but one quickly becomes defensive and wary when you get lectured or dismissed. You learn to recognize very well when a doctor has mentally closed your case. There's a certain look that comes over their face, and suddenly everything starts getting breezily dismissed, or they otherwise make it clear that they're all done and you're on your own!
Bob: if your comment regarding new and disappearing lesions was directed at me, well, here's how neuro #2 explained it (in 2003): since the lesions were small (the reports didn't specify sizes, numbers, or locations except "deep white matter," but the neuro did look at the films herself), the 'appearance and disappearance" was probably due to different slices having been taken. So the "new" ones could have been there all along, she said, and the "disappearing" ones could still be there but just not in the current slices.
Regardless of whether that's a satisfactory explanation (I honestly don't know), it's all ancient history now. I have not seen a neuro (nor had an MRI) since 2003, except for one worthless appt. last year when I switched to Kaiser (their "MS specialist," who had no previous films, test results, etc., knew I didn't have MS fifteen seconds after I started talking, and he was blatantly wrong about so many things that I quickly lost what small confidence I had in him). And that guy, like my first neuro, said he wouldn't put me on the drugs even if I did have MS, so what's the point? I'm happier not banging my head against the brick wall. :)
Good luck with pursuing a diagnosis, Nickie.
Nancy T.
Bob: if your comment regarding new and disappearing lesions was directed at me, well, here's how neuro #2 explained it (in 2003): since the lesions were small (the reports didn't specify sizes, numbers, or locations except "deep white matter," but the neuro did look at the films herself), the 'appearance and disappearance" was probably due to different slices having been taken. So the "new" ones could have been there all along, she said, and the "disappearing" ones could still be there but just not in the current slices.
Regardless of whether that's a satisfactory explanation (I honestly don't know), it's all ancient history now. I have not seen a neuro (nor had an MRI) since 2003, except for one worthless appt. last year when I switched to Kaiser (their "MS specialist," who had no previous films, test results, etc., knew I didn't have MS fifteen seconds after I started talking, and he was blatantly wrong about so many things that I quickly lost what small confidence I had in him). And that guy, like my first neuro, said he wouldn't put me on the drugs even if I did have MS, so what's the point? I'm happier not banging my head against the brick wall. :)
Good luck with pursuing a diagnosis, Nickie.
Nancy T.
Sorry for this, but if seven Radiologist who look at MS MRI a lot tell the Neuros that it is MS (which is pretty rare,) hen I guess your MRI images are pretty much a "textbook" presentation, at least on virtual film! Back to what is often said on this forum. Looks like a DUCK, walks like a Duck, talks like a DUCK --- Must be a DUCK! I'm with your PCP go find a new Neuro with an open mind.
Bob
Bob
Hi COBOB!
No, it wasn't my first MRI. I've had many and used to go by the name "Nickiesworld" here. I started a thread last year, and all my MRI's are listed here: http://www.medhelp.org/posts/Multiple-Sclerosis/Newbie-with-some-questions/show/1112211 (Interesting thread with some very good info posted!)
To make things easier and if anyone's interested, I'm gonna blog all my MRI reports, as well as my symptoms that have been going on for years.
Hi Nancy!
I hear so many different stories about who's diagnosing. While I know the Neuro would be treating me, there's a dang good reason we have those radiologists - to read the MRI and write up the report. I now have 7 radiologists who believe I have MS, and I'm not exactly on the hunt anymore to find a good Neuro, because I've been so angry at them, but my PCP really thinks I should. Well, I'm actually stuck in between, being that Im so afraid of being yelled at, told to shut up and listen (yes, its happened), and I'm tired of being told how I feel when these people arent living inside my body!
No, it wasn't my first MRI. I've had many and used to go by the name "Nickiesworld" here. I started a thread last year, and all my MRI's are listed here: http://www.medhelp.org/posts/Multiple-Sclerosis/Newbie-with-some-questions/show/1112211 (Interesting thread with some very good info posted!)
To make things easier and if anyone's interested, I'm gonna blog all my MRI reports, as well as my symptoms that have been going on for years.
Hi Nancy!
I hear so many different stories about who's diagnosing. While I know the Neuro would be treating me, there's a dang good reason we have those radiologists - to read the MRI and write up the report. I now have 7 radiologists who believe I have MS, and I'm not exactly on the hunt anymore to find a good Neuro, because I've been so angry at them, but my PCP really thinks I should. Well, I'm actually stuck in between, being that Im so afraid of being yelled at, told to shut up and listen (yes, its happened), and I'm tired of being told how I feel when these people arent living inside my body!
Well, old ones disappearing and new ones appearing are NOT consistent with migraine and are very consistent with remyelination and demyelination. I'd kind of press the Neuro to explain what diseases cause spots to appear, then disappear and new spots to form.
Bob
Bob
Same here, my MRIs showed (according to the radiologist's reports) small spots which were "consistent with MS" but not SPECIFIC for it. In other words, the spots COULD be from MS--but could also be from other things. (I am a mild migraineur and also have a slight history of high blood pressure and cholesterol.)
First neuro didn't even mention that I had little spots--I didn't know til much later. Second one mentioned them but also seemed unconcerned, even though the second and third MRI reports both mentioned that the pattern of lesions had changed, with some clearing and new ones appearing. But since they weren't specific for MS, the neuro didn't think this was important and did not ask me to follow up.
LOTS of people have these small nonspecific lesions. Neuros attach little to no importance to them, no matter what the radiologists say.
The radiologists aren't diagnosing your disease--the neuros are. So don't count on having it unless you get a formal diagnosis from a neurologist. (Not that they are always interested in pursuing it!)
Nancy T.
First neuro didn't even mention that I had little spots--I didn't know til much later. Second one mentioned them but also seemed unconcerned, even though the second and third MRI reports both mentioned that the pattern of lesions had changed, with some clearing and new ones appearing. But since they weren't specific for MS, the neuro didn't think this was important and did not ask me to follow up.
LOTS of people have these small nonspecific lesions. Neuros attach little to no importance to them, no matter what the radiologists say.
The radiologists aren't diagnosing your disease--the neuros are. So don't count on having it unless you get a formal diagnosis from a neurologist. (Not that they are always interested in pursuing it!)
Nancy T.
At 38 Ischemic small vessel disease is pretty much out, you sound to healthy for vasculitis, I guess since they are small and may not have that oval shape that makes the look perpendicular from the ventricles, they don't meet that facilities neuro-radiologic standard for
"lesions consistent with MS." I guess maybe they are atypical or maybe they are not. It is a "Read" they toss back to the Neuro to decide whether he wants to make the call and treat you or watch and wait, Was this your first MRI? If it is, it is the baseline and they should be looking to do another MRI in 6-12 months for comparison. This is what the Neuro use for "dissemination in space and time." They want to see changes in the image rather than watching for changes in the patient.
Bob
"lesions consistent with MS." I guess maybe they are atypical or maybe they are not. It is a "Read" they toss back to the Neuro to decide whether he wants to make the call and treat you or watch and wait, Was this your first MRI? If it is, it is the baseline and they should be looking to do another MRI in 6-12 months for comparison. This is what the Neuro use for "dissemination in space and time." They want to see changes in the image rather than watching for changes in the patient.
Bob
Hi, Lulu and thanks for stopping by!
I don't think I explained myself well, sorry. The Neuros aren't saying the differential diagnosis, the radiologist did. In the same report, the radiologist said, "Although non-specific, these foci could be consistent with provided history of multiple sclerosis." Crazy!
I'm guessing this is because the last MRI in March showed demylination as well as ON, but even so, the Neuro didn't believe the two radiologists that read my report. I dont know why the radiologist needed a 2nd opinion, but I thought it was neat, and would help my situation. Of course, nope!
I'm still told my lesions are from migraines and my symptoms are from depression. Interesting how doctors tell me how *I* feel! And the only doctor who is listening to me is my family doc who also agrees I have MS, and wishes to God she could treat me. This is so wrong! :(
I don't think I explained myself well, sorry. The Neuros aren't saying the differential diagnosis, the radiologist did. In the same report, the radiologist said, "Although non-specific, these foci could be consistent with provided history of multiple sclerosis." Crazy!
I'm guessing this is because the last MRI in March showed demylination as well as ON, but even so, the Neuro didn't believe the two radiologists that read my report. I dont know why the radiologist needed a 2nd opinion, but I thought it was neat, and would help my situation. Of course, nope!
I'm still told my lesions are from migraines and my symptoms are from depression. Interesting how doctors tell me how *I* feel! And the only doctor who is listening to me is my family doc who also agrees I have MS, and wishes to God she could treat me. This is so wrong! :(
Nicki,
The docs always list a differential diagnosis - it's a way to say they can never be 100% sure.
They will say - I am 99% sure you have A, but you could still have B. We can't be sure.
The differential for my dx was cancer, sarcodoisis, peripheral neuropathy and age. MS ended up the winner.
The radiologist for you is saying this is probably not MS, but is still a possiblity because this radiologist knows that MS doesn't play by the rules. Plus from his wording it sounds like he was told to look for MS. That certainly sways his opinion, too.
I hope that can make some sense.
be well, Lulu
The docs always list a differential diagnosis - it's a way to say they can never be 100% sure.
They will say - I am 99% sure you have A, but you could still have B. We can't be sure.
The differential for my dx was cancer, sarcodoisis, peripheral neuropathy and age. MS ended up the winner.
The radiologist for you is saying this is probably not MS, but is still a possiblity because this radiologist knows that MS doesn't play by the rules. Plus from his wording it sounds like he was told to look for MS. That certainly sways his opinion, too.
I hope that can make some sense.
be well, Lulu
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