Aa
The much anticipated 3T MRI results...
They barely say anything. The brain was read by one MD, the spine by another who didn't sign off on the report, so I couldn't get copies. Hah. Yes, I could! The spinal MRI report was somewhat better done.
Brain MRI
IMPRESSION:
No gross interval change in the appearance of multiple cerebral white matter T2 hyperintensities. No T1-weighted images and no contrast-enhanced images are submittted.
The differential is unchanged and includes demyelination and small vessel ischemia. The distribution is somewhat atypical for multiple sclerosis but could include lupus and other autoimmune phenomena.
She apparently missed a lot; as the report starts with the fact that its a MRI BRAIN W/WO contrast. They did my brain, changed the coil, did my spine, injected contrast, scanned my spine, changed the coil, then rescanned my brain.
She said that she had compared them to the MR from Siker; my brain MRIs were done and Legacy, though I have a thoracic MRI in their system done at Siker.
I am very good at advocating for myself. I told the person at the film library that I understood there was nothing she could do, went to the MRI desk, asked to speak to someone in charge. I got the "Service Excellence & Business Development Manager, Diagnostic Imaging Services.
I explained my frustration and disappointment, and she e-mailed, phoned, paged, and did the most efficient multitasking I've ever seen. She was surprised by my experiences with my current neuro, and encouraged me to speak with the head of the MS/Neurology department and see about changing neuros. I'm to expect a call from that department head.
I'm also supposed to expect a call from current neuro's nurse explaining my MRI results and attempting to get me in before my Sept. 9 scheduled appointment. I hope with the other neuro that I originally wanted to see; I believe that she's the dept. head that's supposed to call me.
I got an e-mail copy of the MRI of my brain from my current neuros office after my trip up the Hill. Nothing else so far.
This extremely helpful person that I spoke with also printed out a copy of my spinal MRI report, explaining that it hadn't been signed off on yet, but little was likely to change.
Spinal MRI
IMPRESSION:
1. No appreciaable change in the appearance of the linear multisegment T2 hyperintense lesion, as described above, in comparison to the prior. This appearance is atypical for demyelinating disease but it cannot be excluded. Differential consideration includes atypical appearing infarct.
2. Multilevel degenerative changes throughout the cervical and thoracic spine as described above which do not narrow the spinal canal or neural foramina.
The "as described above" lesions, are
Cervical: "Linear multisegment region of high T2 signal is seen throughout the cervical spin is redemonstrated and has an appearance that is atypical for demylinating disease, although this cannot be excluded.
Thoracic: "There is at least 1 linear area of increased T2 signal at the T10 level which is not changed from the prior".
Hello! There was no previous mention of any sort of spinal lesions, except for the "patchy areas" that all neuros said were artifact, nothing.
WTF?
I'm going to get my PCP to request a second opinion reading of my MRIs, or at least the brain MRI, by the radiologist who read my first two brain MRIs. I'll have her request that he measure the lesions, list the locations, orientation; all the stuff listed in the MS protocol. Apparently radiologists follow their own protocols, especially when the ordering neuro lists "History of white matter spots followup, rule out demyelination versus small vessel ischemic".
I need chocolate!
Please, I would appreciate any comments, advice, guesses as to what a linear multisegment T2 hyperintense lesion of the spine could point to. I have some memory of that being discussed, but I can't remember in what context. I think tests have cleared me of lupus.
Help!
Kathy
Brain MRI
IMPRESSION:
No gross interval change in the appearance of multiple cerebral white matter T2 hyperintensities. No T1-weighted images and no contrast-enhanced images are submittted.
The differential is unchanged and includes demyelination and small vessel ischemia. The distribution is somewhat atypical for multiple sclerosis but could include lupus and other autoimmune phenomena.
She apparently missed a lot; as the report starts with the fact that its a MRI BRAIN W/WO contrast. They did my brain, changed the coil, did my spine, injected contrast, scanned my spine, changed the coil, then rescanned my brain.
She said that she had compared them to the MR from Siker; my brain MRIs were done and Legacy, though I have a thoracic MRI in their system done at Siker.
I am very good at advocating for myself. I told the person at the film library that I understood there was nothing she could do, went to the MRI desk, asked to speak to someone in charge. I got the "Service Excellence & Business Development Manager, Diagnostic Imaging Services.
I explained my frustration and disappointment, and she e-mailed, phoned, paged, and did the most efficient multitasking I've ever seen. She was surprised by my experiences with my current neuro, and encouraged me to speak with the head of the MS/Neurology department and see about changing neuros. I'm to expect a call from that department head.
I'm also supposed to expect a call from current neuro's nurse explaining my MRI results and attempting to get me in before my Sept. 9 scheduled appointment. I hope with the other neuro that I originally wanted to see; I believe that she's the dept. head that's supposed to call me.
I got an e-mail copy of the MRI of my brain from my current neuros office after my trip up the Hill. Nothing else so far.
This extremely helpful person that I spoke with also printed out a copy of my spinal MRI report, explaining that it hadn't been signed off on yet, but little was likely to change.
Spinal MRI
IMPRESSION:
1. No appreciaable change in the appearance of the linear multisegment T2 hyperintense lesion, as described above, in comparison to the prior. This appearance is atypical for demyelinating disease but it cannot be excluded. Differential consideration includes atypical appearing infarct.
2. Multilevel degenerative changes throughout the cervical and thoracic spine as described above which do not narrow the spinal canal or neural foramina.
The "as described above" lesions, are
Cervical: "Linear multisegment region of high T2 signal is seen throughout the cervical spin is redemonstrated and has an appearance that is atypical for demylinating disease, although this cannot be excluded.
Thoracic: "There is at least 1 linear area of increased T2 signal at the T10 level which is not changed from the prior".
Hello! There was no previous mention of any sort of spinal lesions, except for the "patchy areas" that all neuros said were artifact, nothing.
WTF?
I'm going to get my PCP to request a second opinion reading of my MRIs, or at least the brain MRI, by the radiologist who read my first two brain MRIs. I'll have her request that he measure the lesions, list the locations, orientation; all the stuff listed in the MS protocol. Apparently radiologists follow their own protocols, especially when the ordering neuro lists "History of white matter spots followup, rule out demyelination versus small vessel ischemic".
I need chocolate!
Please, I would appreciate any comments, advice, guesses as to what a linear multisegment T2 hyperintense lesion of the spine could point to. I have some memory of that being discussed, but I can't remember in what context. I think tests have cleared me of lupus.
Help!
Kathy
Thanks for following my continuing saga! It really helps to know that I'm not fighting this battle alone. It wears me out, and your support helps me prepare for the encounter.
I think I need to make a list of what to discuss/questions to ask when my neuro calls. I'll write down her answers.
One thing about incompetence in health care, especially MY health care, is that it gets me so riled up I have the energy to work at getting things put right.
My roommate heard me on the phone yesterday, telling the Medical Assistant from my neuro's office how messed up my MRI reports were, having to repeat myself and explain things to her.
My roommate complimented me on how calm and thorough I was, not losing my cool even when it was obvious that I knew more about MRIs than the person I was talking to. She said my frustration never colored my voice. Cool, huh?
I just hope I can stay cool when talking to my neuro.
Hugs,
Kathy
I think I need to make a list of what to discuss/questions to ask when my neuro calls. I'll write down her answers.
One thing about incompetence in health care, especially MY health care, is that it gets me so riled up I have the energy to work at getting things put right.
My roommate heard me on the phone yesterday, telling the Medical Assistant from my neuro's office how messed up my MRI reports were, having to repeat myself and explain things to her.
My roommate complimented me on how calm and thorough I was, not losing my cool even when it was obvious that I knew more about MRIs than the person I was talking to. She said my frustration never colored my voice. Cool, huh?
I just hope I can stay cool when talking to my neuro.
Hugs,
Kathy
Well...now that we have learned about as much as we can about each other's brains, I hope that you are going to get somewhere with this mish mash! I, like shadowsister, have nothing to offer you right now other than support and know that I am following your story faithfully.
I have to say that I am really and unfortunately not surprised by the inabilities of some of these medical professionals but I am really happy to see that you are not giving up and you are not going to simply let anyone off the hook! Go get em' girl!
Lots of Hugs,
Rena
I have to say that I am really and unfortunately not surprised by the inabilities of some of these medical professionals but I am really happy to see that you are not giving up and you are not going to simply let anyone off the hook! Go get em' girl!
Lots of Hugs,
Rena
Dear lady,
Thank you, I feel like I've been hugged by the kind of mother that lets you know that everything will be all right. It's so good to hear from you. I hope that things are still improving for you.
Sending you a bouquet of love and hugs,
Kathy
Thank you, I feel like I've been hugged by the kind of mother that lets you know that everything will be all right. It's so good to hear from you. I hope that things are still improving for you.
Sending you a bouquet of love and hugs,
Kathy
I did have a negative LP last year.
None of my three neurologists (so far) have thought I had evidence of spinal lesions, though when I saw my MS specialist in October during a flare, she said that my symptoms would be coming from my cervical spine, though they weren't severe enough to warrant a new MRI at that time. Then she didn't mention any of that in her chart notes.
I had these new 3T MRIs of my brain, c and t spine done April 30th. This is the first time that the linear multisegment T2 hyperintense lesions were mentioned.
Can the spinal symptoms be painful parasthesias? Could something like intercostal muscle spasms that displace ribs somewhat be a symptom? I have some more reading to do!
Thanks for the input; I'll be looking forward to hearing what you learn from your neuro.
Kathy
None of my three neurologists (so far) have thought I had evidence of spinal lesions, though when I saw my MS specialist in October during a flare, she said that my symptoms would be coming from my cervical spine, though they weren't severe enough to warrant a new MRI at that time. Then she didn't mention any of that in her chart notes.
I had these new 3T MRIs of my brain, c and t spine done April 30th. This is the first time that the linear multisegment T2 hyperintense lesions were mentioned.
Can the spinal symptoms be painful parasthesias? Could something like intercostal muscle spasms that displace ribs somewhat be a symptom? I have some more reading to do!
Thanks for the input; I'll be looking forward to hearing what you learn from your neuro.
Kathy
I don't have any thing to add medically, but wanted to check in with you and let you know my prayers continue... I do hope you get all the answers you are searching for.
I hear your frustration, but glad you aren't giving up on life...
Hang in there, better days are ahead for you
Hugs {{{{~!~}}}
I hear your frustration, but glad you aren't giving up on life...
Hang in there, better days are ahead for you
Hugs {{{{~!~}}}
NMO/Devic's was the first thing that came my mind as well when you mentioned the linear multisegment T2 hyperintense lesion.
From what I've learned recently, while NMO most often presents with symptoms related to spinal lesions AND optic nerve involvement, it can occasionally present with symptoms of one or the other. Sometime it takes a while for the other symptoms to reveal themselves, sometimes the disease continues to present clinically with only one or the other set of symptoms. No rhyme nor reason, just like MS.
You might consider requesting the blood test, called NMO-IgG, to check this out, bearing in mind the high false neg rate of this test (although positive results are like 99.9% accurate). Whenever I hear back from my neuro regarding follow up testing (my NMO-IgG recently came back neg), I'll be sure to mention this. From what I have read, the next step could be to re-do the blood test in another 6 months; and/or do a LP and repeat spinal MRI's if they have not been done recently. Forgive my memory lapse: have you ever had a LP and if so, was it + or - for O-bands? In NMO, O-bands are rarely detected, while in MS as you know, O-bands will eventually be present in something like 90% of cases.
From what I've learned recently, while NMO most often presents with symptoms related to spinal lesions AND optic nerve involvement, it can occasionally present with symptoms of one or the other. Sometime it takes a while for the other symptoms to reveal themselves, sometimes the disease continues to present clinically with only one or the other set of symptoms. No rhyme nor reason, just like MS.
You might consider requesting the blood test, called NMO-IgG, to check this out, bearing in mind the high false neg rate of this test (although positive results are like 99.9% accurate). Whenever I hear back from my neuro regarding follow up testing (my NMO-IgG recently came back neg), I'll be sure to mention this. From what I have read, the next step could be to re-do the blood test in another 6 months; and/or do a LP and repeat spinal MRI's if they have not been done recently. Forgive my memory lapse: have you ever had a LP and if so, was it + or - for O-bands? In NMO, O-bands are rarely detected, while in MS as you know, O-bands will eventually be present in something like 90% of cases.
I think that I should write to Dee's boss and let them know what a valuable employee they have in her. I'm happy to hear that there are more like her out there!
NMO, as in Devic's? Wouldn't my eyes be in worse shape? OCT, VEP, everything all normal, except this nystagmus and blurred vision.
I hope I didn't skip straight to PPMS, but if so, it's relatively mild, and they are approving a medication for it, aren't they?
I think we've ruled out just about all the mimics.
Dr. Y's orders to "rule out demyelination versus small vessel ischemic" is what keeps the SVID as one of the differential diagnoses. She doesn't seem to want to give it up.
Dennis Bourdette was a speaker at that MS seminar that I paid my registration fee for well in advance and then totally forgot to attend. I think he's supposed to be very excellent, but is a higher-up at OHSU, and I doubt he's taking new patients.
Maybe he likes aggressive lotus blossoms, lol!
The saga continues...
Kathy
NMO, as in Devic's? Wouldn't my eyes be in worse shape? OCT, VEP, everything all normal, except this nystagmus and blurred vision.
I hope I didn't skip straight to PPMS, but if so, it's relatively mild, and they are approving a medication for it, aren't they?
I think we've ruled out just about all the mimics.
Dr. Y's orders to "rule out demyelination versus small vessel ischemic" is what keeps the SVID as one of the differential diagnoses. She doesn't seem to want to give it up.
Dennis Bourdette was a speaker at that MS seminar that I paid my registration fee for well in advance and then totally forgot to attend. I think he's supposed to be very excellent, but is a higher-up at OHSU, and I doubt he's taking new patients.
Maybe he likes aggressive lotus blossoms, lol!
The saga continues...
Kathy
Our little, aggressive lotus-blossom...
Good going. I believe the common "linear, multi-vertebral segment lesion" is often seen in NMO. It can be seen in PPMS also, and I'm sure some of the mimics.
Yes, you need a report that doesn't refer to vapor-MRIs and where someone has their hands on all the images taken.
I am still surprised that they are calling lesions that large possible small vessel ischemic disease.
Keep us posted on this saga. It's always interesting. Did you notice that on the video discussion that some posted recently that one of the speakers was Dennis Bourdette of OHSU? I have seen some fine reports about him (hmmmm, maybe he was the pediatric neuro)
Quix
Good going. I believe the common "linear, multi-vertebral segment lesion" is often seen in NMO. It can be seen in PPMS also, and I'm sure some of the mimics.
Yes, you need a report that doesn't refer to vapor-MRIs and where someone has their hands on all the images taken.
I am still surprised that they are calling lesions that large possible small vessel ischemic disease.
Keep us posted on this saga. It's always interesting. Did you notice that on the video discussion that some posted recently that one of the speakers was Dennis Bourdette of OHSU? I have seen some fine reports about him (hmmmm, maybe he was the pediatric neuro)
Quix
Thank goodness for Dee. I finally ran into someone like that after getting a runaround just scheduling my 3T MRI. She at long last just parked it there on the phone with me and got in touch with radiology and scheduled the damned thing. It's always nice to run into people like that when everyone seems to have such an aversion to doing what they're paid to do.
Bio
Bio
The woman that helped me out up there today, lets call her Dee, is doing her job wonderfully, thank heavens. I've gotten two e-mails from her, one in response to one from me thanking her, and another checking to see if someone from my neuro's office had indeed called me as they had sent her a note saying that they had.
I had a lengthy discussion with the person from my neuro's office, pointing out the errors in the reports, insisting that an addendum be made correcting the reports.
My neuro is supposed to call me by the end of the week to discuss my MRIs, after she has had time to read the reports (I said "and to review the films herself, right?),and review the films.
I'm sure my neuro's office called because of Dee's efforts. Her latest e-mail said that she would have a manager call me about changing to another neurologist.
I had a really funny Rob Breszny horoscope about being both pushy and macho and sweet and delicate; sometimes both at the same time. It so fits my life right now!
I'll keep pushing!
Kathy
I had a lengthy discussion with the person from my neuro's office, pointing out the errors in the reports, insisting that an addendum be made correcting the reports.
My neuro is supposed to call me by the end of the week to discuss my MRIs, after she has had time to read the reports (I said "and to review the films herself, right?),and review the films.
I'm sure my neuro's office called because of Dee's efforts. Her latest e-mail said that she would have a manager call me about changing to another neurologist.
I had a really funny Rob Breszny horoscope about being both pushy and macho and sweet and delicate; sometimes both at the same time. It so fits my life right now!
I'll keep pushing!
Kathy
Good Lord. Can't anyone do their jobs right any more?
Keep pushing. You're getting so close. And I don't even get the "this one looks like the last one" report on the brain. WHAT?
Bio
Keep pushing. You're getting so close. And I don't even get the "this one looks like the last one" report on the brain. WHAT?
Bio
That's a good thought; I wonder how to find a good neurosurgeon who is a spine specialist around here?
I'll have to do some more sleuthing...
Thanks, Julie!
Kathy
I'll have to do some more sleuthing...
Thanks, Julie!
Kathy
Just a thought...What do you think a neurosurgeon who is a spine specialist would say about yoru spinal MRIs? You could get another reading from another radiologist who isn't sleeping on the job or rushing the reports, but what about a doctor's opinion?
Also, you are such a super sleuth. I am always amazed at how you can read between the lines. Keep it up.
-Julie
Also, you are such a super sleuth. I am always amazed at how you can read between the lines. Keep it up.
-Julie
ooooh, I found some more mistakes on the MRI reports; are these guys asleep when they're doing them?
Still, I wonder about the spinal cord lesions....
Still, I wonder about the spinal cord lesions....
terry, thanks.
I always write too much, and its a lot to swallow, especially if you're tired or foggy or whatever. Thanks for reading it and "feeling my pain". You just lifted a little of mine away.
take it easy,
Kathy
I always write too much, and its a lot to swallow, especially if you're tired or foggy or whatever. Thanks for reading it and "feeling my pain". You just lifted a little of mine away.
take it easy,
Kathy
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