I had a consultation with a Neurologist after having a Brain MRI that showed a bunch of lesions which the Radiologist said could be MS. Just knowing that the MRI was abnormal caused me a great deal of stress. During the consult I was bombarded with a ton of information and told that I need to have 3 more MRI's, have an eye test AND see a Neuro Eye Dr plus a some other stuff. The Neuro has not definitively said I have MS yet talked about all the medication options. I was very apprehensive about the medications and was visibly upset which made the Neuro say (not in a kind way at all) that I would be discharged if I didn't cooperate. I've been thinking about this for a couple of weeks now and just realized -- Isn't a consult where whether the Neuro and I are a good fit? Shouldn't I be able to decide if I want to be a patient there? I felt like my life was no longer going to be my own and if I didn't do as I was told I would be reported to Social Workers or something. I know this sounds weird, but I felt threatened and now I don't trust the Neuro. I do have physical disability, but function perfectly well on my own. Can I go to another Neuro? Any thoughts. Thanks for listening.
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just remember, you hire whom you are comfortable with. You definitely have the right to pick whom you want.hunterd/HuntOP/Dave
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My 0.2 cents is to get a diagnosis first and then look for another neurologist. This guy, however impersonal, is doing all of the right things. You don't want to risk that to someone who says "oh you don't have MS, or we will wait another year. Get the testing, get the diagnosis and then change to someone you like for treatment decisions.
Take care
LisaDisabled RN with MS for 14 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
Tysabri
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Originally posted by DreamerFish View PostJust knowing that the MRI was abnormal caused me a great deal of stress. During the consult I was bombarded with a ton of informationI was very apprehensive about the medications and was visibly upset
You had a lot of information thrown at you pretty quickly. It sounds like you got overwhelmed early on, and that's when things went off the rails.
Originally posted by DreamerFish View PostIsn't a consult where whether the Neuro and I are a good fit?
A consult sometimes results in the patient being referred back to a referring doctor, who continues as the treating doctor. Sometimes it results in the consulting doctor taking over the care of the patient.
You aren't obligated to continue care with a doctor you don't like. But it sounds like the neurologist you saw is doing all the right things. And sometimes that's much more important than whether or not you like him. Your goal is to get the best medical care possible, and sometimes that means putting aside your own expectations and preferences about the kind of doctor you would "like." Far too often, patients put up with really bad medical care because they like the doctor, but would do better with a more competent doctor they don't feel so warm and fuzzy about.
You can change doctors whenever you want to. (Your medical insurance may have policies about changing doctors, but that's a completely separate issue.)
Doctors, though, can't just dump patients on a whim. There are legal issues they must comply with. A doctor can legally dismiss a patient for being uncooperative and for being medically noncompliant. I can't even imagine what transpired during your appointment that prompted your neurologist to bring up a noncompliance dismissal at the very first visit.
Originally posted by DreamerFish View PostI felt like my life was no longer going to be my own
Your doctor isn't your servant, and doesn't work for you, like an employee. Your doctor is a professional you choose to be in partnership with, with aspects you have no control over. You can choose to participate in that partnership or not.
I agree completely with the other poster who recommended that you finish your evaluation and testing with your current neurologist and get a diagnosis, and then change to a different neurologist you're a better fit with for treatment and ongoing care.
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Originally posted by 22cyclistMy 0.2 cents is to get a diagnosis first and then look for another neurologist. This guy, however impersonal, is doing all of the right things. You don't want to risk that to someone who says "oh you don't have MS, or we will wait another year. Get the testing, get the diagnosis and then change to someone you like for treatment decisions.Originally posted by jreagan70I agree completely with the other poster who recommended that you finish your evaluation and testing with your current neurologist and get a diagnosis, and then change to a different neurologist you're a better fit with for treatment and ongoing care.
Originally posted by jreagan70I can't even imagine what transpired during your appointment that prompted your neurologist to bring up a noncompliance dismissal at the very first visit.
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Hi DreamerFish:
Wow. It sounds like your neurologist has mastered the arts of thoroughness and efficiency! Taking notes during your office visits is a great idea.
A lot of people in the testing process put off having a spinal tap until it's apparent that a diagnosis is hindered without one. Many people get their MS diagnosis without ever having one because their MRIs, clinical exam and history of symptoms all fit the diagnostic criteria. It's not at all unusual for people to draw the line at having an invasive procedure.
If you want to put off having a spinal tap, you can explain to the good doctor that you'd like to see what the MRIs show and what the results of your eye specialist exams show before you have the spinal tap. It is, after all, a partnership, and you do have some say in how you get the testing done.
If push comes to shove over a spinal tap and you really don't want to have one, then it's OK for you to quit at that point and take the results of the tests you have had to another neurologist.
It's a good idea anyway to start collecting your own copies of your neurology records. You may have to get them from different places, and you may have to pay for them, but it's worth it. You can get all of your MRIs on discs and the radiology reports that go with them. And you can get copies of all of your lab tests and any tests you have done at the eye doctors. And, of course, be sure to get copies of the doctor's notes of your office visits. Medical records sometimes don't get sent when they're supposed to, so it's always a good idea to have your own copies and take them with you to subsequent doctors.
As to where to find another neurologist who knows about MS, you can contact the National Multiple Sclerosis Society (either the national society at www.nmss.org or your local chapter) and ask for names of MS-savvy neurologists near you. You can also go the the website of the Consortium of Multiple Sclerosis Centers (www.mscare.org) and click Directories > MS Centers to search for an MS Center of Excellence in your state. And then you'll be able to see if any of those doctors take your insurance.
It's still a good idea to go as far as you can with the neurologist you have. The more information the doctor has, the more easily he can arrive at a diagnosis. But since the doctor is supposed to be your partner and not a dictator, you can stop any time you want to.
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Thank you for all the feedback and information. I really appreciate it.
Originally posted by jreagan70 View PostAnd, of course, be sure to get copies of the doctor's notes of your office visits.
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Hi DreamerFish:
The medical information you can access online through your particular medical insurance or medical center is not the same thing as your complete medical record. Your complete record is where medical practitioners' actual exam notes (the narratives) are. That's part of the medical records that get sent to other providers.
As a patient you are absolutely entitled by law to a copy of just about everything that's in your medical record. (I say just about because there are a few legal exceptions that allow a doctor to release a summary of an appointment instead of the exact record. I don't know the details of those exceptions.) You can get your actual, full record by requesting a copy from your doctor or clinic's medical records department -- you'll get to specify exactly what you want.
It is, of course, a good idea to have a copy of your records for the data they contain. But medical records also contain some inaccuracies and other surprises you should be aware of.
For example, a patient's mental and emotional status are an assessment that's part of their medical record. If your doctor described you as a nutcase, you should know that because you're going to have to deal with that with every other doctor who reads those records. That's one of the reasons why it's a good idea to go as far along with this doctor as you can and, hopefully, get your diagnosis before you move on to another doctor. It's best to not have to go through the diagnostic process again with that kind of an assessment complicating things.
There are factual inaccuracies in just about everyone's medical record. Those little things occur in all kinds of human interaction. If they're small and harmless, people usually just leave them alone. But by knowing what's in your record, you know if there's anything major that might need to be dealt with.
So start by requesting copies of your actual, full records and take it from there.
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Originally posted by jreagan70 View PostThere are factual inaccuracies in just about everyone's medical record. Those little things occur in all kinds of human interaction. If they're small and harmless, people usually just leave them alone. But by knowing what's in your record, you know if there's anything major that might need to be dealt with.
Although they don't come right out and say I am a nutcase, there are some things said along with diagnosis codes used that point to questioning my mental status. It puzzles me as I don't think I am the first person to become upset with the avalanche of information given. I am going ahead with the testing and will meet with the Neuro after all is done.
I honestly don't think I am going to continue with this office as the Neuro's attitude reminds me of how I was treated in the past by people who were supposed to care about me, but did things to make me question myself. It gives me a sick feeling in the pit of my stomach and fills me with dread. My question is: should I mention the inaccuracies or just let it go?
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Is it really necessary?
Had a brain MRI a month ago on a 1.5 which showed "new" (active?) lesions. The Neuro wants another one done on a 3.0 to be able to better give me a diagnosis. I have no new symptoms. I really don't feel well after the gadolinium, so I would rather not have it done.
Anyone know if it's possible to tell on the 3.0 that they aren't MS lesions and maybe blood clots or something? From what I read on the radiologists report I have about 25 scattered lesions.
Had the c-spine/t-spine, but don't know results on that yet.
I'm thinking this is overkill.
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Originally posted by DreamerFish View PostI'm thinking this is overkill.
It's an important life skill to know when to change an opinion or course of action based on new information. And, based on this new information, it sounds like it's time to step up your efforts to find a new neurologist.
It's true that a 3T MRI is more sensitive and has the potential to pick up lesions that might not show up on a 1.5T MRI. But you just had the 1.5T MRI a month ago that already shows brain lesions and you have no new symptoms. So there's no medical reason for a new MRI. So I agree with your impression that another MRI so soon is overkill.
To me, that sounds like your neuro is asking you and your insurance company to pay for a procedure for the sole reason of covering his inability to know what to make of your 1.5T MRI. To me, that's overstepping. If he wanted a 3T MRI so much, he could have specified for you to have a 3T in the first place.
It isn't your job to compensate for his lack or knowledge and/or confidence. There's a little voice in my head that tells me that this is the kind of indecision that might cause him to push you for a spinal tap and then blame you for being uncooperative if you decide not to have one.
As a aside, one of my neurologists early on was so mean and unpleasant that I refused to let her do my spinal tap. She was so mean that I wasn't going to let her touch me. I waited to have it until I changed to a different neurologist. I'm glad I waited because the whole procedure went quite uneventfully and I was never uncomfortable.
Obviously I can't tell you what to do. But if I were in your position, I would ride the wave with the current neurologist as far as I could without doing anything that I really didn't want to do. But if I hadn't already done so, I would right now start looking for a new neurologist to see when I get to the end of the line with this one.
As I mentioned earlier, you can contact the National Multiple Sclerosis Society (either the national society at www.nmss.org or your local chapter) and ask for names of MS-savvy neurologists near you. You can also go the the website of the Consortium of Multiple Sclerosis Centers (www.mscare.org) and click Directories > MS Centers to search for an MS Center of Excellence in your state. And then you'll be able to see if any of those doctors take your insurance.
If your current neurologist decides to stop being your doctor, that's his choice. The information gathered will be valuable with your next neuro. And if that happens, remember to try not to take it personally. He is who he is, and you are who you are. Just take what you've learned and move on.
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jreagan70 Thank you so much for your response. It's so nice to have input from people who have been through the process.
I believe there should be enough information with the original brain MRI, c-spine/t-spine MRI, the blood tests to rule out other things, the VER test, and my history to give an impression.
The "intimidation tactics" used (e.g. threatening me with discharge from the practice), now that I have thought more about it, are a way to get me to toe the line AND to cover up insecurities. I think I may have bruised a fragile ego.
I need to trust my gut on this and make the decision that is right for me. Get the results of tests done so far and then move on.
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I see this a little differently. I think you should go for the 3T MRI. This will help them define any of the small lesions to see if they "look" like MS lesions or not, otherwise they may be unspecified. You can ask for something for nausea after the contrast just communicate with him how it makes you feel. You can also request no contrast, but I suspect they are looking for any active lesions (even the tiny ones) My MS specialist has switched us all to 3T machines and boy do I have more lesions than we thought in my brainstem (an area that is hard to read on a 1.5 T.
I would do it, he is just not ordering this willy nilly, or trying to waste your money or time. There is a method to the madness of the process of diagnosis, you just have to go with the flow and trust he knows what he is doing. If you start to micro manage him you are going to run into some trouble since you are not a doctor, much less a neurologist. Just go for the MRI.
Take care
LisaDisabled RN with MS for 14 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
Tysabri
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Originally posted by 22cyclist View PostMy MS specialist has switched us all to 3T machines and boy do I have more lesions than we thought in my brainstem (an area that is hard to read on a 1.5 T.
You say trust the Neuro to know what they are doing. Unfortunately, I don't. Too many red flags.
Thank you for answering my post. As I said before, it's nice to talk to people who have been there. No one "out here" gets it.
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