Aa
Feeling anxious/confused....:-/
I got my MRI films from back in '03 when I was having persistent left-sided headaches. I will drop them off on Tuesday when I have the other EP's done, so hopefully the neuro will have time to look them over.
Back then, they did an MRI and an MRA. I had zero knowledge of MS back then, not even on my radar.The films are huge sheets, not like the CD's of today. So this morning I am holding them up to the light and have to stop after 4 sheets because my arms were aching.
One of the sets, to my untrained, amateur, rookie, only-reading-up-on-MS-for-a-few-weeks eye, I saw one part that had a LOT of enhanced looking white areas. I counted 8, perhaps 9.
How do I walk in to my neuro on Thursday and say "what's this?" What is the line between being assertive, proactive, etc. or just thinking that was from back in '03, let's deal with the here and now and listen to the results of the tests of '08? (My MRI from now has "significant abnormality" of my sinuses.....?! I don't even get sinus headaches or infections!)
The sinus issue doesn't explain my shooting pains in my arm, my legs jumping, my blurry vision, my feet tingling, my weak left arm, my (fill in the blank).
I'd be interested in hearing what to do, because I feel this is THE week! I have my VEP and BAER tests tomorrow, and the appt. with the neurologist on Thursday. I feel anxious, as if this is Make or Break week. Several years ago, I was assertive with a dr. (gyn.) in regards to info I knew and a decision I made and he YELLED at me (fortunately he was just a referral for a 2nd opinion and not my pcp, so I was out of there.)
I want to be informed and yet not step on toes.
HELP.
Suzanne
Back then, they did an MRI and an MRA. I had zero knowledge of MS back then, not even on my radar.The films are huge sheets, not like the CD's of today. So this morning I am holding them up to the light and have to stop after 4 sheets because my arms were aching.
One of the sets, to my untrained, amateur, rookie, only-reading-up-on-MS-for-a-few-weeks eye, I saw one part that had a LOT of enhanced looking white areas. I counted 8, perhaps 9.
How do I walk in to my neuro on Thursday and say "what's this?" What is the line between being assertive, proactive, etc. or just thinking that was from back in '03, let's deal with the here and now and listen to the results of the tests of '08? (My MRI from now has "significant abnormality" of my sinuses.....?! I don't even get sinus headaches or infections!)
The sinus issue doesn't explain my shooting pains in my arm, my legs jumping, my blurry vision, my feet tingling, my weak left arm, my (fill in the blank).
I'd be interested in hearing what to do, because I feel this is THE week! I have my VEP and BAER tests tomorrow, and the appt. with the neurologist on Thursday. I feel anxious, as if this is Make or Break week. Several years ago, I was assertive with a dr. (gyn.) in regards to info I knew and a decision I made and he YELLED at me (fortunately he was just a referral for a 2nd opinion and not my pcp, so I was out of there.)
I want to be informed and yet not step on toes.
HELP.
Suzanne
Hi Suzanne. I can understand your feelings about Yale. I would be the same. Sometimes large medical centers are not a good place to be. Craig has found that to be the case for the Philadelphia medical university hospitals. I was hoping that Yale would be different, but obviously not. I think you just need a neuro that will listen to you and try to make some legitimate sense out of what you are going through.
Good Luck and if I were you I would ask for an appt with an MS neuro.
Elaine
Good Luck and if I were you I would ask for an appt with an MS neuro.
Elaine
Yale is about 50 miles from here. I went there for other issues back in '06.
I had asked my pcp for a referral to Yale due to abdominal issues, thought it was related to old endometriosis and ovarian issues; the bladder problem came up.
Just as an aside, I'd had terrible bladder issues, they diagnosed me with interstitial cystitis. I was to drive the one hour (each way) to Yale and have instillation treatments, they would only take 5 minutes, once a week for 8 weeks. Major waste of time. After 2 treatments, I asked for a uro/gyn in my own county to do the other 6, they didn't know of any. My father has a uro dr., so I went to see a dr. in that group. He said IC was a diagnosis of last resort, did Yale do X, Y, and Z before they diagnosed me, asked to see my records. NO, Yale did not. So he had me do X, Y and Z.
Long story short, my bladder issues are GONE now, I do not have IC. And I wonder now if that was one of those wacky MS type things, you have it and then it remits.
Bottom line: been to Yale, not entirely pleased with the prospect of going there again.
Also, I am only 10 minutes from a Neurology group that has an MS center!
http://www.mscarect.org/
I am not seeing the dr. featured here. I don't know how I'd get in to see him, but I guess we'll figure this out by the end of the week.
I have had my thyroid checked; also, Lyme, sed rate, B12........all seem okay.
The other thing I need the dr. to realize is that I am not self-diagnosing. I wound up at his doorstep due to a PA suggesting my pcp refer me to a neuro to rule out MS or fibromyalgia. Thus began this year's dr's visits.
Suzanne
I had asked my pcp for a referral to Yale due to abdominal issues, thought it was related to old endometriosis and ovarian issues; the bladder problem came up.
Just as an aside, I'd had terrible bladder issues, they diagnosed me with interstitial cystitis. I was to drive the one hour (each way) to Yale and have instillation treatments, they would only take 5 minutes, once a week for 8 weeks. Major waste of time. After 2 treatments, I asked for a uro/gyn in my own county to do the other 6, they didn't know of any. My father has a uro dr., so I went to see a dr. in that group. He said IC was a diagnosis of last resort, did Yale do X, Y, and Z before they diagnosed me, asked to see my records. NO, Yale did not. So he had me do X, Y and Z.
Long story short, my bladder issues are GONE now, I do not have IC. And I wonder now if that was one of those wacky MS type things, you have it and then it remits.
Bottom line: been to Yale, not entirely pleased with the prospect of going there again.
Also, I am only 10 minutes from a Neurology group that has an MS center!
http://www.mscarect.org/
I am not seeing the dr. featured here. I don't know how I'd get in to see him, but I guess we'll figure this out by the end of the week.
I have had my thyroid checked; also, Lyme, sed rate, B12........all seem okay.
The other thing I need the dr. to realize is that I am not self-diagnosing. I wound up at his doorstep due to a PA suggesting my pcp refer me to a neuro to rule out MS or fibromyalgia. Thus began this year's dr's visits.
Suzanne
Hi Suzanne,
Are you far from Yale medical center near New Haven??
At least that is a major medical center. And "Louie's Lunch" home of the first hamburger in the U.S. is across the street and so good!!!
In all seriousness, Yale may be a better bet for you. Also, have you had your thyroid checked via blood levels of thyroid hormone, TSH etc?? Sorry if I missed it from a previous post.
Elaine
Are you far from Yale medical center near New Haven??
At least that is a major medical center. And "Louie's Lunch" home of the first hamburger in the U.S. is across the street and so good!!!
In all seriousness, Yale may be a better bet for you. Also, have you had your thyroid checked via blood levels of thyroid hormone, TSH etc?? Sorry if I missed it from a previous post.
Elaine
Re: Dismissing - I meant his words and tone were dismissive of you. I didn't know about the ealier praise for your insight and intelligence. The words following "This Woman..." sounded "dismissive." He's not throwing you out, but it sounds like he's not willing to think farther. Remember, we only see what you have told us, like the five blind men describing an elephant.
If he is reporting tests that he didn't perform on your exam, then he is committing insurance fraud, malpractice, and forever telling the world that your exam is currently normal when it may well not be. That is a Bozo-No-No! He could have missed the very sign which would move you toward a diagnosis. You really need to see the MS guy.
And, yes, the MRI is that sensitive to inflammation in the sinuses. If someone wants to treat you based on that demand a CT scan first.
Quix
If he is reporting tests that he didn't perform on your exam, then he is committing insurance fraud, malpractice, and forever telling the world that your exam is currently normal when it may well not be. That is a Bozo-No-No! He could have missed the very sign which would move you toward a diagnosis. You really need to see the MS guy.
And, yes, the MRI is that sensitive to inflammation in the sinuses. If someone wants to treat you based on that demand a CT scan first.
Quix
1) Understood about peeking at the MRI's. Curiosity and all that!
4) So he dismissed me already?! He did write that my "judgment and insight were excellent". And my "fund of knowledge was good". Later on he wrote in the Impressions about "this woman". So maybe he had a good sense in the beginning, but then can't figure it out. I don't know, and I'm thinking he won't say.
What would be the reason/excuse for dismissing a patient?
5) He did NOT do one single one of those tests!
6) Yes, this is true, I did have a cold about 2 weeks before the MRI. Wow, it could still pick that up?
7) This neuro is in a group that does have MS as a sub-specialty. I'm cringing thinking I'd have to ask for a referral to THE MS guy if one of his associates has dismissed me as fine.
Well, VEP and BAER tomorrow, let's see how it unfolds.
Thanks everyone!
Suzanne
4) So he dismissed me already?! He did write that my "judgment and insight were excellent". And my "fund of knowledge was good". Later on he wrote in the Impressions about "this woman". So maybe he had a good sense in the beginning, but then can't figure it out. I don't know, and I'm thinking he won't say.
What would be the reason/excuse for dismissing a patient?
5) He did NOT do one single one of those tests!
6) Yes, this is true, I did have a cold about 2 weeks before the MRI. Wow, it could still pick that up?
7) This neuro is in a group that does have MS as a sub-specialty. I'm cringing thinking I'd have to ask for a referral to THE MS guy if one of his associates has dismissed me as fine.
Well, VEP and BAER tomorrow, let's see how it unfolds.
Thanks everyone!
Suzanne
I have a couple things to add to all this.
1) You are getting yourself in trouble if you try to read your own MRIs. It is tantalizing to do, but there are many cases where a cut (image slice) will catch a part of something that normally looks brighter and looks like a clear lesion when it's not. Many things other than lesions look brighter or duller, depending on the technique. I basically will not comment on things people see by themselves. Neuroradiologist spend years refining their skills with MRIs.
2) Radiologists vary as much as any person in any profession, take, for example, neurologists. Some can be totally wrong as mine was on my first two MRIs of the brain.
3) Radiologists may not see, misinterpret, or fail to mention things that are on the films. I also do not trust any neuro who doesn't look at their own MRIs. They know the patient's history and, we hope, physical exam. It's their own field for goodness sake!
4) When your neuro did not even want you to reference your own list he was showing, as he did in his letter, that he had already dismissed you. The "This woman..." part is saying your symptoms are due to stress.
5) Pinpr*ck he pokes you up and down your legs and arms and face to see if it is sharp or dull. You say "sharp" or "dull" Vibration - He hold as vibrating thing like a tuning fork to the bony side of your ankle ar wrist and you are to tell him when you no longer feel the vibration. Soft touch - He stokes you with a feathered out piece of cotton (like on a Q-tip) to see if you percieve the touch.
6) You CANNOT relay on the MRI assessment of sinus disease. It will call the slight congestion from a previous cold as severe sinusitis. The MRI WAY overcalles sinus disease. The Gold Standard for evaluating sinus disease is a CT scan.
7) If you don't stand up to this guy, then you will be out in the hall with the door slamming against your tush in minutes, after he tells you you are fine.
Quix
1) You are getting yourself in trouble if you try to read your own MRIs. It is tantalizing to do, but there are many cases where a cut (image slice) will catch a part of something that normally looks brighter and looks like a clear lesion when it's not. Many things other than lesions look brighter or duller, depending on the technique. I basically will not comment on things people see by themselves. Neuroradiologist spend years refining their skills with MRIs.
2) Radiologists vary as much as any person in any profession, take, for example, neurologists. Some can be totally wrong as mine was on my first two MRIs of the brain.
3) Radiologists may not see, misinterpret, or fail to mention things that are on the films. I also do not trust any neuro who doesn't look at their own MRIs. They know the patient's history and, we hope, physical exam. It's their own field for goodness sake!
4) When your neuro did not even want you to reference your own list he was showing, as he did in his letter, that he had already dismissed you. The "This woman..." part is saying your symptoms are due to stress.
5) Pinpr*ck he pokes you up and down your legs and arms and face to see if it is sharp or dull. You say "sharp" or "dull" Vibration - He hold as vibrating thing like a tuning fork to the bony side of your ankle ar wrist and you are to tell him when you no longer feel the vibration. Soft touch - He stokes you with a feathered out piece of cotton (like on a Q-tip) to see if you percieve the touch.
6) You CANNOT relay on the MRI assessment of sinus disease. It will call the slight congestion from a previous cold as severe sinusitis. The MRI WAY overcalles sinus disease. The Gold Standard for evaluating sinus disease is a CT scan.
7) If you don't stand up to this guy, then you will be out in the hall with the door slamming against your tush in minutes, after he tells you you are fine.
Quix
I'm going in Thursday with my CD from my most recent MRI, seeing a second neuro who will look at the films right there with me. I want him to see them with his own eyes (he's an MS specialist), which my first neuro never did. This one is going to sit down with me and review, and I'm going to ask specifically about different areas where things "stand out" on the T2 flair. Even from what I've read on here, radiologists' impressions vary enormously, from their phrasing to what they bother to note (or not note). So I think it's important for the doctor who knows YOU to look at YOUR films.
I do like the teamwork suggestion and the suggestions about raising your voice in an interrogative with every statement. Very clever, y'all.
E
I do like the teamwork suggestion and the suggestions about raising your voice in an interrogative with every statement. Very clever, y'all.
E
Can radiology reports be completely wrong? I asked my dh if these folks just get socomplacent at looking over stacks of films that things slip by.
I have films AND reports on brain MRI/MRA from 2003.
~~Impressions of both, normal.
I think I see white "thingies", and quite a few. But on so many films (8 or 9 huge sheets), they're only in a couple of the multitude of frames.
I have CD AND reports on brain and cervical MRI's from 2008, 2 weeks ago. That CD has 271 images on it!
~~Impression of brain: no abnormality is the bottom line, but up in the paragraphs, it is using words like "significant abnormality of both maxillary sinuses". As I mentioned above, I don't even get sinus issues!
~~Impression of cervical spine: mild disc bulges (amongst other cervical-type wordage)
I even got copies of the neuro report.
~~Impressions: "This woman has a lot of complaints and I think some of the abnormalities on her neurologic exam may have been transient at the time she was actually experiencing vertigo."
Loved the "this woman" part. :-(
I did my timeline, he didn't want to read his copy (says he's dyslexic). So I asked my dh to hand me my copy so *I* could refer to it and the neuro waves off my doing that.!! Just because HE doesn't need one, that precludes ME from referring to my OWN notes?!
In the neuro report, he mentions in the Sensory Exam: pinprick, vibration, and light touch were normal. My dh was with me, I/we do NOT even think he did this test!
So I have a bit to talk about, and of course, don't think he'd be welcoming me taking out a list of things to chat about. I have to brush up on all my topics in my head!
Writing this out is helpful, thanks for the sounding board.
Suzanne
I have films AND reports on brain MRI/MRA from 2003.
~~Impressions of both, normal.
I think I see white "thingies", and quite a few. But on so many films (8 or 9 huge sheets), they're only in a couple of the multitude of frames.
I have CD AND reports on brain and cervical MRI's from 2008, 2 weeks ago. That CD has 271 images on it!
~~Impression of brain: no abnormality is the bottom line, but up in the paragraphs, it is using words like "significant abnormality of both maxillary sinuses". As I mentioned above, I don't even get sinus issues!
~~Impression of cervical spine: mild disc bulges (amongst other cervical-type wordage)
I even got copies of the neuro report.
~~Impressions: "This woman has a lot of complaints and I think some of the abnormalities on her neurologic exam may have been transient at the time she was actually experiencing vertigo."
Loved the "this woman" part. :-(
I did my timeline, he didn't want to read his copy (says he's dyslexic). So I asked my dh to hand me my copy so *I* could refer to it and the neuro waves off my doing that.!! Just because HE doesn't need one, that precludes ME from referring to my OWN notes?!
In the neuro report, he mentions in the Sensory Exam: pinprick, vibration, and light touch were normal. My dh was with me, I/we do NOT even think he did this test!
So I have a bit to talk about, and of course, don't think he'd be welcoming me taking out a list of things to chat about. I have to brush up on all my topics in my head!
Writing this out is helpful, thanks for the sounding board.
Suzanne
Have to disagree slightly with Amy. My old neuro depended entirely on the radiologist's report, and basically didn't even look at the films. So he pretty much dismissed me. The MS neuro thinks the radiology report is completely wrong. This has cost me years of symptoms and maybe some permanent problems.
ess
ess
Hi. Do you have a copy of the radiologist's report? This will be much more helpful for you than the films, in my opinion. If it were me, I would not even let the neuro know I had looked at the films (at least not at first) and let him tell you what's what. Listen to him like "he knows everything", and if he doesn't address what you are concerned about (if he just says "everything is normal") I would say "oh, great. Is it possible to look at the report from the radiologist?" Then see what the report says, and if anything looks suspicious to you, address it as a question to him, at that time. If there is no report, you might say something like "are white areas ever normal? I did notice there were some on my films, but I'm not sure what I am looking at". Gotta handle the ego carefully sometimes. Good luck, Amy
Hi. We have so many discussions here about the care and handling of neuros. There's even a thread or two called that, so you might want to enter that in the search bar in the top right of the main page. It's really too bad that we have to have a strategy, but we do, so may as well plan it right.
I would suggest you come across as making the assumption the you and the neuro are a team, so you'll be 'in a huddle' figuring out what's wrong. Make statements, but let your voice go up at the end, making them into questions. Don't be shy, but keep the assertiveness level under wraps. Say you were looking at the films and don't understand what these thingies are. Don't suggest they're lesions, but do suggest they look odd to you. In other words, raise issues but don't 'lead the witness.'
Best of luck,
ess
I would suggest you come across as making the assumption the you and the neuro are a team, so you'll be 'in a huddle' figuring out what's wrong. Make statements, but let your voice go up at the end, making them into questions. Don't be shy, but keep the assertiveness level under wraps. Say you were looking at the films and don't understand what these thingies are. Don't suggest they're lesions, but do suggest they look odd to you. In other words, raise issues but don't 'lead the witness.'
Best of luck,
ess
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