Aa
This is so frustrating!
Went to the neuro for a 3 month check up today. He comes in and asks how things are going. I pretty much tell him the same things I told him 3 months ago. Not much change.
He gets my MRI out and looks at it. We had already gone over it 3 months ago. He though he saw new lesions but then the radiologist told him no.
I thought this time would just be a check up but NO. He came in and told me that my symptoms do not line up with the MRI. I have ON, one 3mm lesion in my right frontal lobe white matter and some areas in my periventricular region that were not there 2 years ago.
They did not call them lesions in the periventricular area but ubos. That was what my 3 mm lesion was 2 years ago. It has become larger. But none of this is acknowledged by the doctor or his radiologist because, and I am only assuming because they have my previous films and reports, they were not done at THEIR center.
I can't figure out any other reason why they would totally disregard the MRI's I have had in the past at another center.
So he starts in with your MRI is not bad enough to be causing your symptoms. You can go off of your meds including the DMD. "You do have MS BUT it is very mild and I think your symptoms are cause by a deep seeded psychological issue".
He told me my clinical exam did not mean much. He totally disregarded my swallow study that showed aspiration. Told me that I should have no physical restrictions and that I should be doing everything every other normal healthy person is doing.
He told me to work off all of my medications and come back in 6 months and we will see what the MRI looks like. Yet he still said I have MS.
I told him I had been to a psychiatrist and he should have received a letter from him saying that I am perfectly fine mentally. He said they could not find the letter.
I checked and the letter actually had not been sent to him....it HAS NOW!! I have it too and not only does the letter say that I am not depressed and do NOT have underlying issues the doctor went on to say that there was nothing mentally causing the physical symptoms I am having.
I am so upset. Now I have to find another doctor. Why do doctors disregard tests that are done at other hospitals other than their own? I decided I need to find a doctor close to home even if he is not an MS doctor.
I need to use their hospitals and labs I guess. This is just awful. Glad my husband was there with me.
This doctor told me last time that I was one of the few people with very few lesions but a lot of symptoms. He talked to me about PPMS. I agree, I do have VERY few lesions right now but I have been on DMD's for two years!! I started them about 7 months after my first bout of ON.
Could they be WORKING?!?!? Wonder why we are made to take these awful shots if they are not going to keep us from forming new lesions?
I am just a mess about this. I still have a diagnosis but feel pretty chewed out and like an idiot. He made me feel like I was faking. I asked him how a person would fake aspiration during a swallow study. I am sure he did not like that and I am not one to read a symptom and then develop it all of a sudden
I don't have every symptom. He told me swallowing troubles only occur in advanced stages but it says right on the MS society web site that swallowing studies can occur at any point in MS. I have a dud don't I............shoot!!!!. I thought this was a good doctor.
I know what I need to do, I just need an ear to listen and understand and tell me I am right.
LA
He gets my MRI out and looks at it. We had already gone over it 3 months ago. He though he saw new lesions but then the radiologist told him no.
I thought this time would just be a check up but NO. He came in and told me that my symptoms do not line up with the MRI. I have ON, one 3mm lesion in my right frontal lobe white matter and some areas in my periventricular region that were not there 2 years ago.
They did not call them lesions in the periventricular area but ubos. That was what my 3 mm lesion was 2 years ago. It has become larger. But none of this is acknowledged by the doctor or his radiologist because, and I am only assuming because they have my previous films and reports, they were not done at THEIR center.
I can't figure out any other reason why they would totally disregard the MRI's I have had in the past at another center.
So he starts in with your MRI is not bad enough to be causing your symptoms. You can go off of your meds including the DMD. "You do have MS BUT it is very mild and I think your symptoms are cause by a deep seeded psychological issue".
He told me my clinical exam did not mean much. He totally disregarded my swallow study that showed aspiration. Told me that I should have no physical restrictions and that I should be doing everything every other normal healthy person is doing.
He told me to work off all of my medications and come back in 6 months and we will see what the MRI looks like. Yet he still said I have MS.
I told him I had been to a psychiatrist and he should have received a letter from him saying that I am perfectly fine mentally. He said they could not find the letter.
I checked and the letter actually had not been sent to him....it HAS NOW!! I have it too and not only does the letter say that I am not depressed and do NOT have underlying issues the doctor went on to say that there was nothing mentally causing the physical symptoms I am having.
I am so upset. Now I have to find another doctor. Why do doctors disregard tests that are done at other hospitals other than their own? I decided I need to find a doctor close to home even if he is not an MS doctor.
I need to use their hospitals and labs I guess. This is just awful. Glad my husband was there with me.
This doctor told me last time that I was one of the few people with very few lesions but a lot of symptoms. He talked to me about PPMS. I agree, I do have VERY few lesions right now but I have been on DMD's for two years!! I started them about 7 months after my first bout of ON.
Could they be WORKING?!?!? Wonder why we are made to take these awful shots if they are not going to keep us from forming new lesions?
I am just a mess about this. I still have a diagnosis but feel pretty chewed out and like an idiot. He made me feel like I was faking. I asked him how a person would fake aspiration during a swallow study. I am sure he did not like that and I am not one to read a symptom and then develop it all of a sudden
I don't have every symptom. He told me swallowing troubles only occur in advanced stages but it says right on the MS society web site that swallowing studies can occur at any point in MS. I have a dud don't I............shoot!!!!. I thought this was a good doctor.
I know what I need to do, I just need an ear to listen and understand and tell me I am right.
LA
JJ don't beat yousef up. We all make mistakes and we depend on each other to correct them - if they need correcting. I've goofed up and someone always comes by and sets the record straight.
Q
Q
COMMUNITY LEADER
OK first thing i need to do is RETRACT my 3am brain, Lexapro is an SSRI not a psychotropic used for sitzaphrenia or bipolar 1. I was thinking Zyprexa, i noticed the error when i got up this morning, took awhile for me to work out, sorry about that, forgive?!!
I have checked out all the drugs your on, lexapro does cause notable weight gain, also has a list a mile long on possible side effects, movement issues etc. though its really really hard to say if you are having side effects from it. Even if you think back to why you went on it and can say with 100% accuracy that your mobility and other issues got worse, you've got MS and thats what can and does happen in MS, could just be a coincidence even if you could be 100% sure.
The only thing that i noted about all the other drugs, apart from betaseron, was their duplicity, but even that doesn't have to mean anything of anything. Just the usual drugs used for MS, Clonasepam i did see gets commonly perscribed for things like tremors, spasticity and even anxiety, Gabepentin commonly perscribed for things like pain, spasms, spasticity, oxcabazepin for pain, Baclogen again for spasticity and spasms, Flomax for urinary issues, associated muscle spasms, and lastly Lexapro an SSRI for GAD, depression etc.
It isn't unheard of for drugs that target a particular problem to exaserbating instead of resolve and also for some drugs to counter act when used together, but that would take someone with qualifications beyond mine, sorry! The one thing i really feel strongly about is not to stop any of these drugs, if you deside to follow the neuro's advise, not to do it with out a tapering off schedule, fully monitored by a DR. The idea of you just getting up tomorrow and not taking anything, beggers believe, loony tunes and to me shows a total disregard for current safety standards as well as your well being.
So again sorry for my 3am brain mix up, still got the side effects right just not the class of drug, still it was a wopper of a mistake to my way of thinking. You have a lot to digest i'm sure, dont forget we are here for you :-)
Cheers......JJ
I have checked out all the drugs your on, lexapro does cause notable weight gain, also has a list a mile long on possible side effects, movement issues etc. though its really really hard to say if you are having side effects from it. Even if you think back to why you went on it and can say with 100% accuracy that your mobility and other issues got worse, you've got MS and thats what can and does happen in MS, could just be a coincidence even if you could be 100% sure.
The only thing that i noted about all the other drugs, apart from betaseron, was their duplicity, but even that doesn't have to mean anything of anything. Just the usual drugs used for MS, Clonasepam i did see gets commonly perscribed for things like tremors, spasticity and even anxiety, Gabepentin commonly perscribed for things like pain, spasms, spasticity, oxcabazepin for pain, Baclogen again for spasticity and spasms, Flomax for urinary issues, associated muscle spasms, and lastly Lexapro an SSRI for GAD, depression etc.
It isn't unheard of for drugs that target a particular problem to exaserbating instead of resolve and also for some drugs to counter act when used together, but that would take someone with qualifications beyond mine, sorry! The one thing i really feel strongly about is not to stop any of these drugs, if you deside to follow the neuro's advise, not to do it with out a tapering off schedule, fully monitored by a DR. The idea of you just getting up tomorrow and not taking anything, beggers believe, loony tunes and to me shows a total disregard for current safety standards as well as your well being.
So again sorry for my 3am brain mix up, still got the side effects right just not the class of drug, still it was a wopper of a mistake to my way of thinking. You have a lot to digest i'm sure, dont forget we are here for you :-)
Cheers......JJ
BTW - PPMS is noted for often having very small lesions and not so many of them. What they often have is more early atrophy of the brain and spinal cord.
Q
Q
Oh, my dear! I am so outraged and appalled by this that I cannot speak! I am literally sick to my stomach. There is so much I want to say, and I am paralyzed to express my wrath!
This guy does not desever his license. No physician should ever throw a whole diagnosis out the window without any explanation and smirk and shrug back at a patient.
He clearly stopped using his mind years ago and long before he ever tried to treat a patient with MS. In order to replace a non-thinking brain he has decided to slavishly worhsip the MRI. If the MRI shows it, then it is true. If the MRI doesn't show it, it is not true. There is no need to listen to what a patient is going through. One needs only to look at the all-mighty MRI.
You said something else that caught my attention. How much does he mandate that patients use "his" MRI machine? Is it really his? Does he really make you use only one radiologist? If so, then he is guilty of fraud/trust/ethics violations. Way back in the 80's the government cracked down on physicians referring to facilities (testing equipment, pharmacies, rehab, etc) that they have a person, financial stake in. They are NOT allowed to restrict where a patient has testing, or therapy, or gets their prescriptions. Bigtime legal/ethical penalties. It sounds like this guy may have stepped over that line.
He has adopted some false "rules" to serve instead of thinking.
You all know the first. You cannot ask that a person's MRI and their symptoms to match. We have seen too many people wrongly loose their diagnosis, because some new and stupid doctor thinks "they don't have enough lesions." Calling a lesion a UBO cannot stand in the way of a diagnosis. UBO stands for Unidentified Bright Object. If they don't know what it is, then they certainly cannot say it isn't an MS lesion!!!
He also is a coward without a shred of integrity. When he told you this was psychiatric, he thought there was no evidence to the contrary. When he was told about the letter from the psychiatrist showing that you did not have a mental health basisi for your problems, he couldn't back up, apologize and rethink this. Of course he couldn't rethink anything, because the man doesn't have a thinking brain in his head. Probably the only inhabitants of that skull of his are two seizing spirochetes (think syphillis) connected by single synapse.
We all know of many who are wracked with symptoms, but have few lesions to show for them. I even discussed this with my new neuro and talked about it in my newest journal page:
"I jokingly made a comment about how so few lesions can wreak such havoc on my body. He snorted and said that we can't see "most of the lesions" in MS with our state of the art machines. (Take note, Friends!) "
This is not a man who should be taking v=care of anything more complex than a lawn.
Now, he is keeping the MS diagnosis since you pulled the whole psychiatric thing out from under him, but he wants you off all your meds and wants to repeat an MRI in 6 months???? For what reason? Actually I know what for. If there are no good new lesions he can just remove the diagnosis forthwith.
You must get a new doctor, even if you have to travel to see one. Surely someone on this forum has a good one you can get in to see! DR. Herbert at NYU would do you justice, even if it was only a one-time thing. Then a new doc could take that expertise and treat you justly.
As for going off all your meds - That just seems foolish! Lexapro is not an atypical anti-psychotic (maybe you are thinking of Zyprexa). Lewxapro is a SSRI used for major anxiety and depression.
I do suggest that you see the psychiatrist again and report this to him for a followup comment which may be needed as you report this neuron to the proper authorities.
"You do have MS BUT it is very mild and I think your symptoms are cause by a deep seeded psychological issue".
Clearly this DUMB dork doesn't know the first thing about MS. The severity of the diease is assessed by the severity of the disability to the patient! It IS NOT AN MRI DIAGNOSIS!!! Nothing about your disease is mild! He is also contradicting himself is acknowledging that you have MS, but that the neuro symptoms you have are psychological.
what?
Now, you have got to get into better hands ASAP. I know what a burden that is to you.
I think coming off all your meds would not be a safe thing to do. To EVEN suggest that you just stop everything shows that he doesn't even know that several of the meds you are on can have significant withdrawal syndromes. By not walking you through their discontinuation step by step he is tredding on medical malpractice.
He must be reported to the State medical board. 1) for unprofessional behavior during this visit, (I could list the specific things you should say) and 2 ) for requiring that patients use "his" MRI and determining who reads them. The law does not allow this kind of monopoly and conflict of interest.
I cannot fathom how this must have shaken you - and how deeply. I know you have been worried about this very thing - sounds like he had given off some early warning signs. Please know that the problem here is with this non-doctor who is literally playing with your life. But, you are the one who must deal with the fallout.
How good a relationship do you have with your PCP?
I am so sorry this has happened to you. Please make appointments with your GP and with the psychiatrist to get some idea of where to go from here. And I hope others with jump in and tell you about good docs (MS neuros) in your region.
Hugs
Quix
This guy does not desever his license. No physician should ever throw a whole diagnosis out the window without any explanation and smirk and shrug back at a patient.
He clearly stopped using his mind years ago and long before he ever tried to treat a patient with MS. In order to replace a non-thinking brain he has decided to slavishly worhsip the MRI. If the MRI shows it, then it is true. If the MRI doesn't show it, it is not true. There is no need to listen to what a patient is going through. One needs only to look at the all-mighty MRI.
You said something else that caught my attention. How much does he mandate that patients use "his" MRI machine? Is it really his? Does he really make you use only one radiologist? If so, then he is guilty of fraud/trust/ethics violations. Way back in the 80's the government cracked down on physicians referring to facilities (testing equipment, pharmacies, rehab, etc) that they have a person, financial stake in. They are NOT allowed to restrict where a patient has testing, or therapy, or gets their prescriptions. Bigtime legal/ethical penalties. It sounds like this guy may have stepped over that line.
He has adopted some false "rules" to serve instead of thinking.
You all know the first. You cannot ask that a person's MRI and their symptoms to match. We have seen too many people wrongly loose their diagnosis, because some new and stupid doctor thinks "they don't have enough lesions." Calling a lesion a UBO cannot stand in the way of a diagnosis. UBO stands for Unidentified Bright Object. If they don't know what it is, then they certainly cannot say it isn't an MS lesion!!!
He also is a coward without a shred of integrity. When he told you this was psychiatric, he thought there was no evidence to the contrary. When he was told about the letter from the psychiatrist showing that you did not have a mental health basisi for your problems, he couldn't back up, apologize and rethink this. Of course he couldn't rethink anything, because the man doesn't have a thinking brain in his head. Probably the only inhabitants of that skull of his are two seizing spirochetes (think syphillis) connected by single synapse.
We all know of many who are wracked with symptoms, but have few lesions to show for them. I even discussed this with my new neuro and talked about it in my newest journal page:
"I jokingly made a comment about how so few lesions can wreak such havoc on my body. He snorted and said that we can't see "most of the lesions" in MS with our state of the art machines. (Take note, Friends!) "
This is not a man who should be taking v=care of anything more complex than a lawn.
Now, he is keeping the MS diagnosis since you pulled the whole psychiatric thing out from under him, but he wants you off all your meds and wants to repeat an MRI in 6 months???? For what reason? Actually I know what for. If there are no good new lesions he can just remove the diagnosis forthwith.
You must get a new doctor, even if you have to travel to see one. Surely someone on this forum has a good one you can get in to see! DR. Herbert at NYU would do you justice, even if it was only a one-time thing. Then a new doc could take that expertise and treat you justly.
As for going off all your meds - That just seems foolish! Lexapro is not an atypical anti-psychotic (maybe you are thinking of Zyprexa). Lewxapro is a SSRI used for major anxiety and depression.
I do suggest that you see the psychiatrist again and report this to him for a followup comment which may be needed as you report this neuron to the proper authorities.
"You do have MS BUT it is very mild and I think your symptoms are cause by a deep seeded psychological issue".
Clearly this DUMB dork doesn't know the first thing about MS. The severity of the diease is assessed by the severity of the disability to the patient! It IS NOT AN MRI DIAGNOSIS!!! Nothing about your disease is mild! He is also contradicting himself is acknowledging that you have MS, but that the neuro symptoms you have are psychological.
what?
Now, you have got to get into better hands ASAP. I know what a burden that is to you.
I think coming off all your meds would not be a safe thing to do. To EVEN suggest that you just stop everything shows that he doesn't even know that several of the meds you are on can have significant withdrawal syndromes. By not walking you through their discontinuation step by step he is tredding on medical malpractice.
He must be reported to the State medical board. 1) for unprofessional behavior during this visit, (I could list the specific things you should say) and 2 ) for requiring that patients use "his" MRI and determining who reads them. The law does not allow this kind of monopoly and conflict of interest.
I cannot fathom how this must have shaken you - and how deeply. I know you have been worried about this very thing - sounds like he had given off some early warning signs. Please know that the problem here is with this non-doctor who is literally playing with your life. But, you are the one who must deal with the fallout.
How good a relationship do you have with your PCP?
I am so sorry this has happened to you. Please make appointments with your GP and with the psychiatrist to get some idea of where to go from here. And I hope others with jump in and tell you about good docs (MS neuros) in your region.
Hugs
Quix
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