Aa
Stop me if you've heard this one before....
My MS specialist appointment was that old not-so-sweet song.
You may remember a month ago; I was happy because she saw me during a flare of symptoms, my reflexes were more hyper, my balance was poor, she seemed WAY more interested, and said that my symptoms would be coming from my cervical spine, but there's not enough hard evidence enough yet to do another MRI of my spine, but to call her and come in if I have another flare of symptoms?
I finally got my chart notes from that visit this morning, and she said everything was normal, more so than the previous visit's chart notes."The patient is alert, awake, and oriented x3. she is a good historian, does not have any language deficits, has no dysarthria, normal affect. Extraocular movements are intact. There is no nystagmus. She has normal facial symmetry, normal hearing, normal tongue and palatal movement. Motor exam shows she has normal tone and normal strength throughout in all 4 extremitites. Grip strenght is 140 lbs on right and 120 on left with steel grip meter. Tremulousness in her upper extremeties distally is seen but no gross ataxia is seen. Gait evaluation reveals normal casual gait. She is able to walk on toes and heel. Tandem is a little hesitant. The patient completed 25-feet walk in 6.6 seconds without aid. (last visit I did it in 5 seconds).
Who was she looking at? Did my chart notes get mixed up? My tongue had tremors and pulled slightly to my left when I stuck it out. I walked like I was a little drunk, and my heel-to-toe (tandem) had me waving my arms for balance and stepping out to keep from falling. If anyone is interested in all of my symptoms, check out the timeline in my journal.
OK, enough of that. I let it all go, so I would be able to acheive something with today's appointment with her. She was very kind and professional, but obviously did not remember much of my history. She scanned through my chart (on a smallish computer screen), but had trouble finding information we were discussing. She apologized for not remembering anything about my MRIs," but she sees so many of them"!
I reassured her that I understood.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
She then told me that she was sure that my brain lesions were from little strokes caused by my (benign and minimal) heart arrhythmias, and that all my symptoms could be attributed to little strokes.
***************************************************************************************************************************************
Yes, I went to the doctor because of neurological symptoms, had a brain MRI that showed multiple brain lesions, and was then told that I had small vessel ischemic disease; not once, but by THREE different neurologists. I managed to see my specialist while having obvious neurological symptoms, and she says everything's normal in her chart notes.
****************************************************************************************************************************************
If she thinks I'm having little strokes, in my small vessels, wouldn't a CT angiogram be a good idea when I have one of my flares? Or just one at all, to show if my small vessels have been compromised by ischemic events?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ARRRRRGGGGGHH!!!!!!!!!!!
Ohhhhhhhmmmmmmmmmmmmmm.........................
OK, I kept my cool. I smiled. I asked her for a new Rx for Provigil, as the last one was written wrong to use my coupon for a free 7 day supply. She wrote it for 7- 200 mg. tablets, and told me to cut them in quarters, so I could take 50 mg. a day for 28 days. :o) She said if that doesn't work, we could try Ritalin. Wouldn't that give me heart arrhythmias?
I asked about my vision issues, and she asked if I had an ophthamologist. I explained that my ophthamologist was just happy that I had no signs of optic neuritis and looked no further. She said they have neuro-ophthamologist's that they refer patients to, and I said "That would be great!" I'm being referred to a female neuro-ophthamologist.
I told her that I was having urodynamic testing done on Nov. 21 by my urogynecologist, and was there anything special I should ask to have done? She looked surprised, and then said that the numbers from the usual tests will give her all the information that is neccessary.
She asked me if I had any other questions. Tee hee, of course I did. I asked her to check and see if my last spinal films were adequate to show lesions clearly, as a radiologist, a neurologist, and a sports medicine doc all saw something that she didn't. The first two of those said it could be artifact, but the neuro said "appeared to be artifact on saggital and not clearly seen on axial" and the sports medicine doc definitely saw an obvious abnormality on both sagittal and axial.
I told her that I was concerned that neuro #2 had already decided that I had no neurological issues and may not have ordered comprehensive films, and could she check and see if they were done under the MS Protocol.
She looked at them, came back and said she still saw nothing (does she know about the MS Protocol?). I looked deep in her eyes (eye contact is important) and asked that I be allowed to have new spinal films done on their great 3T machine, with the proper protocol, and smiled weakly.
She finally promised that if I waited a few months, we could do all (brain, cervical, thoracic) at once, and that it would only take about two hours. I'm sure her few months are different than mine, but we'll see.
I asked her about my having trouble typing, with my vision blurring and hand tremors, and what connection in the brain would make it possible for me to have, yesterday, closed my eyes and touch-typed two sentences perfectly. She gave it a real sincere effort, looking to make sure I understood what she was saying, and ended up saying that it shouldn't happen, and that when the messages from the brain aren't accepted by the hands, there could be a lesion interfering with the signal, but with me it was most likely from a little stroke!!!!!! I almost laughed. I did enjoy hearing which parts of the brain are responsible for different signals; wish I could have been a doctor.
I have a follow-up appointment with her in 5 months, with the assurance that if I have a bad flare of symptoms they will work me into her schedule.
"Recommendations: The patient's current and recent multiple neurological symptoms are noted. However due to the lack of clear pathological signs and non specific brain MRI, the diagnosis of multiple sclerosis cannot be made at this time. It does remain in differential, however. The patient does have a risk factor for small vessel ischemic disease that has included the cardiac arrhythmias, notably paroxysmal surpaventricular tachycardia in the past."
Amazingly enough, I'm not depressed or even really very upset. She is just a part of the team, and I'm picking that team. I have faith that I'll find the team members that will fit the pieces of my puzzle together and I'll finally get a diagnosis and treatment for whatever's going on with my body. Since she's still seeing me, she must think there is some chance that evidence will suddenly appear pointing toward MS, or she would kick me down to a regular neurologist.
Then again, the neurologist I want to see is the Director of Neurology, so maybe she's being told to stick with me. Whatever, it will all work out in the end.
I'm opening myself to the possibility that the universe (God) has the answers to my questions and the people bearing those answers will join my team. I feel that we are all interconnected, and those with answers may be drawn to those with questions.
I was sure drawn to this forum to help me through the hard times and to remind me to reach out to others.
Peace and love
You may remember a month ago; I was happy because she saw me during a flare of symptoms, my reflexes were more hyper, my balance was poor, she seemed WAY more interested, and said that my symptoms would be coming from my cervical spine, but there's not enough hard evidence enough yet to do another MRI of my spine, but to call her and come in if I have another flare of symptoms?
I finally got my chart notes from that visit this morning, and she said everything was normal, more so than the previous visit's chart notes."The patient is alert, awake, and oriented x3. she is a good historian, does not have any language deficits, has no dysarthria, normal affect. Extraocular movements are intact. There is no nystagmus. She has normal facial symmetry, normal hearing, normal tongue and palatal movement. Motor exam shows she has normal tone and normal strength throughout in all 4 extremitites. Grip strenght is 140 lbs on right and 120 on left with steel grip meter. Tremulousness in her upper extremeties distally is seen but no gross ataxia is seen. Gait evaluation reveals normal casual gait. She is able to walk on toes and heel. Tandem is a little hesitant. The patient completed 25-feet walk in 6.6 seconds without aid. (last visit I did it in 5 seconds).
Who was she looking at? Did my chart notes get mixed up? My tongue had tremors and pulled slightly to my left when I stuck it out. I walked like I was a little drunk, and my heel-to-toe (tandem) had me waving my arms for balance and stepping out to keep from falling. If anyone is interested in all of my symptoms, check out the timeline in my journal.
OK, enough of that. I let it all go, so I would be able to acheive something with today's appointment with her. She was very kind and professional, but obviously did not remember much of my history. She scanned through my chart (on a smallish computer screen), but had trouble finding information we were discussing. She apologized for not remembering anything about my MRIs," but she sees so many of them"!
I reassured her that I understood.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
She then told me that she was sure that my brain lesions were from little strokes caused by my (benign and minimal) heart arrhythmias, and that all my symptoms could be attributed to little strokes.
***************************************************************************************************************************************
Yes, I went to the doctor because of neurological symptoms, had a brain MRI that showed multiple brain lesions, and was then told that I had small vessel ischemic disease; not once, but by THREE different neurologists. I managed to see my specialist while having obvious neurological symptoms, and she says everything's normal in her chart notes.
****************************************************************************************************************************************
If she thinks I'm having little strokes, in my small vessels, wouldn't a CT angiogram be a good idea when I have one of my flares? Or just one at all, to show if my small vessels have been compromised by ischemic events?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ARRRRRGGGGGHH!!!!!!!!!!!
Ohhhhhhhmmmmmmmmmmmmmm.........................
OK, I kept my cool. I smiled. I asked her for a new Rx for Provigil, as the last one was written wrong to use my coupon for a free 7 day supply. She wrote it for 7- 200 mg. tablets, and told me to cut them in quarters, so I could take 50 mg. a day for 28 days. :o) She said if that doesn't work, we could try Ritalin. Wouldn't that give me heart arrhythmias?
I asked about my vision issues, and she asked if I had an ophthamologist. I explained that my ophthamologist was just happy that I had no signs of optic neuritis and looked no further. She said they have neuro-ophthamologist's that they refer patients to, and I said "That would be great!" I'm being referred to a female neuro-ophthamologist.
I told her that I was having urodynamic testing done on Nov. 21 by my urogynecologist, and was there anything special I should ask to have done? She looked surprised, and then said that the numbers from the usual tests will give her all the information that is neccessary.
She asked me if I had any other questions. Tee hee, of course I did. I asked her to check and see if my last spinal films were adequate to show lesions clearly, as a radiologist, a neurologist, and a sports medicine doc all saw something that she didn't. The first two of those said it could be artifact, but the neuro said "appeared to be artifact on saggital and not clearly seen on axial" and the sports medicine doc definitely saw an obvious abnormality on both sagittal and axial.
I told her that I was concerned that neuro #2 had already decided that I had no neurological issues and may not have ordered comprehensive films, and could she check and see if they were done under the MS Protocol.
She looked at them, came back and said she still saw nothing (does she know about the MS Protocol?). I looked deep in her eyes (eye contact is important) and asked that I be allowed to have new spinal films done on their great 3T machine, with the proper protocol, and smiled weakly.
She finally promised that if I waited a few months, we could do all (brain, cervical, thoracic) at once, and that it would only take about two hours. I'm sure her few months are different than mine, but we'll see.
I asked her about my having trouble typing, with my vision blurring and hand tremors, and what connection in the brain would make it possible for me to have, yesterday, closed my eyes and touch-typed two sentences perfectly. She gave it a real sincere effort, looking to make sure I understood what she was saying, and ended up saying that it shouldn't happen, and that when the messages from the brain aren't accepted by the hands, there could be a lesion interfering with the signal, but with me it was most likely from a little stroke!!!!!! I almost laughed. I did enjoy hearing which parts of the brain are responsible for different signals; wish I could have been a doctor.
I have a follow-up appointment with her in 5 months, with the assurance that if I have a bad flare of symptoms they will work me into her schedule.
"Recommendations: The patient's current and recent multiple neurological symptoms are noted. However due to the lack of clear pathological signs and non specific brain MRI, the diagnosis of multiple sclerosis cannot be made at this time. It does remain in differential, however. The patient does have a risk factor for small vessel ischemic disease that has included the cardiac arrhythmias, notably paroxysmal surpaventricular tachycardia in the past."
Amazingly enough, I'm not depressed or even really very upset. She is just a part of the team, and I'm picking that team. I have faith that I'll find the team members that will fit the pieces of my puzzle together and I'll finally get a diagnosis and treatment for whatever's going on with my body. Since she's still seeing me, she must think there is some chance that evidence will suddenly appear pointing toward MS, or she would kick me down to a regular neurologist.
Then again, the neurologist I want to see is the Director of Neurology, so maybe she's being told to stick with me. Whatever, it will all work out in the end.
I'm opening myself to the possibility that the universe (God) has the answers to my questions and the people bearing those answers will join my team. I feel that we are all interconnected, and those with answers may be drawn to those with questions.
I was sure drawn to this forum to help me through the hard times and to remind me to reach out to others.
Peace and love
THANK YOU! I thought I'd been "dry-labbed", I just didn't know what to call it. I don't want to get her defensive; how about if I printed out what I wrote on the forum that day, how happy and hopeful I was, and send it to her.
I could ask her if possibly her notes had been transcribed wrong, as I remember a much different appointment, and even wrote it all down that day. I already corrected her notes once; on my first visit she said that my second neuro was someone I had never met. I wrote an e-mail, saying I was concerned that the chart notes I had sent from neuro #2 had been misplaced, as the name in her chart notes was wrong.
Her office thanked me and assured me that they had the correct chart notes.
As for the MRIs, I'm very comfortable with calling the MRI department when I finally get the orders, and ask all about what brand of machine, what kind of software, how long it normally takes, and ask about the specifics of the MS Protocol.
I'm patient, but not indefinitely so!
Shoot, time to go to my PCP appointment. Wobbly, I'll write later, OK?
Kathy
I could ask her if possibly her notes had been transcribed wrong, as I remember a much different appointment, and even wrote it all down that day. I already corrected her notes once; on my first visit she said that my second neuro was someone I had never met. I wrote an e-mail, saying I was concerned that the chart notes I had sent from neuro #2 had been misplaced, as the name in her chart notes was wrong.
Her office thanked me and assured me that they had the correct chart notes.
As for the MRIs, I'm very comfortable with calling the MRI department when I finally get the orders, and ask all about what brand of machine, what kind of software, how long it normally takes, and ask about the specifics of the MS Protocol.
I'm patient, but not indefinitely so!
Shoot, time to go to my PCP appointment. Wobbly, I'll write later, OK?
Kathy
Quix, you can set me correct any day! I do remember how I was totally amazed at all the stuff I learned the two times I went in for my 3T MRI's in NY, and the taught me a lot (the slicing, the legnth of time, the correct dyes), and then my Neuro #4 blew me away when she sat me down and said that my MRI's were incomplete becuase they didn't go in and use something to go in and check the density of the lesions and all that jazz inside the brain, she was ticked and said even if the radiologist doesn't think it's necessary, if he sees anything different on the films he needs to do it right away, and whatever they do, it would have measured the amount of lactate in my brain and she needed that and now they didn't have it. So, yes, I felt humbled and realized I still have much to learn in the areas of MRI's, it is a field all in itself, N#4 said, but she said that it would benefit dr.'s if they knew more about it so they could order more stuff BEFORE the MRI is completed. I totally agreed with her on that one.
~Sunnytoday~
~Sunnytoday~
yes...I'm sorry to hear this happened to you... you wait and see a specialist and what happens...they don't get the correct info on the report.
This has happened with me as well...even had a Neuro lose the whole last visit??? on his computer...so he didn't have any report of the last visit..and that was the visit when all my symptoms were weird..
hang in there and hopefully it will work out soon....
take care
wobbly
undx
This has happened with me as well...even had a Neuro lose the whole last visit??? on his computer...so he didn't have any report of the last visit..and that was the visit when all my symptoms were weird..
hang in there and hopefully it will work out soon....
take care
wobbly
undx
From what you describe, the neuro "dry-lab'd" your exam (term is from chemistry lab where the student makes up the values for the experiment, but never handles the chemicals). This is likely because she took inadequate notes and wait some time before she dictated the report. If you had visible abnormalities that she commented on and she neglected to report them, then she dictated a false report. Ideally she would be challenged on the report, but this usually results in defensiveness and hostility.
I'm so sorry this has happened to you.
Quix
I'm so sorry this has happened to you.
Quix
I want to come back and comment on the visit part of this, but I have to bring up something about how long it takes to do such and such films.
There are various types of 3T machines and each is powered by different software. When I had my head and spine 3T I was in the machine for 3 full hours - actually slightly more. We can't say anything about this given all the variables that can go into the running of an MRI.
The software being used can make a huge difference in the resolution of the images. This is something I know little about, but some software is better than others at resloving lesions in MS.
Quix
There are various types of 3T machines and each is powered by different software. When I had my head and spine 3T I was in the machine for 3 full hours - actually slightly more. We can't say anything about this given all the variables that can go into the running of an MRI.
The software being used can make a huge difference in the resolution of the images. This is something I know little about, but some software is better than others at resloving lesions in MS.
Quix
Hi Kathy,
Your post shows great faith and strength. I will continue to pray for answers for you.
Good Luck with the urodynamic testing.
Elaine
Your post shows great faith and strength. I will continue to pray for answers for you.
Good Luck with the urodynamic testing.
Elaine
Wow Kathy, I don't even know what to say to all of this. And your next MRI will be sometime in the future? It is good to hear you are not distressed by how today's appt. went.
You're tough!
Lulu
You're tough!
Lulu
Thank you. It is sad that we have to go through so many neuros to try to find our answers, but like you say, they aren't gods (though it sure seems that some of them think they are!).
At least you just flipped out to a letter! How utterly rude to suggest that you just weren't trying. If you grunted or yelled, she would probably say you were exaggerating. At least you didn't go back and try so hard that you accidentally smacked her a good one!
I will have to think of the proper way to assure that the MRIs are done properly. I really don't think she understands the MS protocol; I actually printed it out and took it with me, but I figured it might ding her ego if I brought it out, so I left it in my bag. I'm not ready to move on to #4 yet, as long as I'm still making some progress here.
I took a copy of the McDonald Criteria, since she mentioned the Barkhoff criteriea, which is a total diagnosis-by-MRI kind of criteria. I left it in my bag, too. I'll have to ask Quix if it's ever a good idea to share important information with a neurologist, or if you just move on to the next one and hope that they understand? Actually, Quix, if you read this, do you have any suggestions on making sure my MRIs are done properly?
Dr. Y. really did seem to "see" me last month, but now it seems like she forgot. Maybe something will jog her memory, or maybe a 3T MRI will show that patchy area on my thoracic spine as a lesion or two, and a properly done cervical MRI might show whatever's causing the symptoms that apparently come from there. Or something will show up from urogynecologist or neuro-ophthamologist.
I just gotta have faith! Oh no, that old George Michaels song is playing in my head now!
:o)
Kathy
At least you just flipped out to a letter! How utterly rude to suggest that you just weren't trying. If you grunted or yelled, she would probably say you were exaggerating. At least you didn't go back and try so hard that you accidentally smacked her a good one!
I will have to think of the proper way to assure that the MRIs are done properly. I really don't think she understands the MS protocol; I actually printed it out and took it with me, but I figured it might ding her ego if I brought it out, so I left it in my bag. I'm not ready to move on to #4 yet, as long as I'm still making some progress here.
I took a copy of the McDonald Criteria, since she mentioned the Barkhoff criteriea, which is a total diagnosis-by-MRI kind of criteria. I left it in my bag, too. I'll have to ask Quix if it's ever a good idea to share important information with a neurologist, or if you just move on to the next one and hope that they understand? Actually, Quix, if you read this, do you have any suggestions on making sure my MRIs are done properly?
Dr. Y. really did seem to "see" me last month, but now it seems like she forgot. Maybe something will jog her memory, or maybe a 3T MRI will show that patchy area on my thoracic spine as a lesion or two, and a properly done cervical MRI might show whatever's causing the symptoms that apparently come from there. Or something will show up from urogynecologist or neuro-ophthamologist.
I just gotta have faith! Oh no, that old George Michaels song is playing in my head now!
:o)
Kathy
Hey, at least she's not saying you're making it up!
Wow... I didn't know about the fluoroscopy! All my MRIs have been done with and without contrast, but I've never had them done on a 3T machine. My spine took a long time on the 0.7 T - looking at the scans, and considering the low-resolution of the machine, I'm glad it took that long. It was 2 hours for the t-spine alone.
Wow... I didn't know about the fluoroscopy! All my MRIs have been done with and without contrast, but I've never had them done on a 3T machine. My spine took a long time on the 0.7 T - looking at the scans, and considering the low-resolution of the machine, I'm glad it took that long. It was 2 hours for the t-spine alone.
First off, you are amazing. I got a consult letter from a neuro and flipped out when she totally said that I didn't pass most of my exam from lack of effort. I wanted to ask if I should grunt evertime I push or pull for a neuro test. I totally applaud your calmness and all the amazing effort you put into this appt. You rock!
I truely hope this lady actually "sees" you when you go in there the next time, or something. It seems like she is not seeing what your other doctors are seeing, which is strange to me when she is a MS dr. But then. I've been there and done that. I had to smile, I just realized that this Friday I will be going to Neuro #4. How totally sad, and not becuase the other's were all bad, they just either didn't know or didn't care enough. Sometimes we are a mystery to them, and they aren't god and they certianly don't know as much as we'd like them to. I like you hanging on to her, that's good, at least you are consistant.
Oh, and last but not least. I just had my MRI's done on a 3 T. IF they are done according to MS protocol, it will take 1 hour and 45 minutes at least for the brain and that is not including if they find lesions and need to enhance them with that white stuff (flouro-something ?) I'm not talking about the gandolium dye stuff that they should be using for contrast, but extra stuff they should use to go in and check the density and jazz of the lesions. And then the spine will take at least that long or longer becuase they have to change positions and the dyes, etc. AND THEY MUST USE CONTRAST. And it takes so long becuase they have to use such small slicing. If it takes 2 hours for the whole thing you are being cheated, according to the techs at NYU radiology MRI center thing.
She must not know that much about it.
~Sunnytoday~
I truely hope this lady actually "sees" you when you go in there the next time, or something. It seems like she is not seeing what your other doctors are seeing, which is strange to me when she is a MS dr. But then. I've been there and done that. I had to smile, I just realized that this Friday I will be going to Neuro #4. How totally sad, and not becuase the other's were all bad, they just either didn't know or didn't care enough. Sometimes we are a mystery to them, and they aren't god and they certianly don't know as much as we'd like them to. I like you hanging on to her, that's good, at least you are consistant.
Oh, and last but not least. I just had my MRI's done on a 3 T. IF they are done according to MS protocol, it will take 1 hour and 45 minutes at least for the brain and that is not including if they find lesions and need to enhance them with that white stuff (flouro-something ?) I'm not talking about the gandolium dye stuff that they should be using for contrast, but extra stuff they should use to go in and check the density and jazz of the lesions. And then the spine will take at least that long or longer becuase they have to change positions and the dyes, etc. AND THEY MUST USE CONTRAST. And it takes so long becuase they have to use such small slicing. If it takes 2 hours for the whole thing you are being cheated, according to the techs at NYU radiology MRI center thing.
She must not know that much about it.
~Sunnytoday~
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