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
HoW far away are you for John Hopkins Hospital? My Friend took his wife there and got a second opinion due to the way they were being treated by their local neuro. When they came back with a letter and results stating she indeed did have MS from John Hopkins she has gotten nothing but respect from that doctor. I am lucky that my Neuro is one on the best in Charlotte, NC. He takes everything very seriously. I know that it was not hard to get into JH hospital. I think it is in Baltimore, but I'm not 100% positive on that. Or try the Mayo Clinic.
WOW! Oh how I wish I couldn't relate to having a man in a white coat masquerading for a doctor! It is truly amazing how ignorance can cause a human to turn into a defensive, accusatory demon. "Because I don't understand why your condition isn't as I would expect nor one I've seen in my own personal practice - YOU - the patient - are obviously lying, deluding yourself, mentally unstable, or just seeking attention." HOGWASH!!! I would expound on my anger and outrage, but no one wants to read the novel.
As for MS lesions and symptoms - we know that there are no clear correlations - so forget trying to figure that out. BUT, the aspirating - I have a great deal of experience there - perhaps not of the same type as yours however. One thing I want to remind you of, that so many doctors fail to take into consideration is - just because you have one dx, doesn't mean you might not have another. I have several different diseases and many have overlapping symptoms, making it hard to know which is causing which symptoms. My esophageal issues with severe reflux and aspiration are caused by my Systemic Sclerosis. I also have Gastroparesis. So, you might continue your search for info. I know it's hard to find doctors who can sort through all this.
I empathize with you and wish you well. Please know that we understand and support you. I've been through some dark times through the years with doctors. In the end, we must realize, the truth exists no matter what a doctor does or doesn't understand. And only the patient can relate their symptoms with accuracy - keep plugging away.
God Bless, Jan
As for MS lesions and symptoms - we know that there are no clear correlations - so forget trying to figure that out. BUT, the aspirating - I have a great deal of experience there - perhaps not of the same type as yours however. One thing I want to remind you of, that so many doctors fail to take into consideration is - just because you have one dx, doesn't mean you might not have another. I have several different diseases and many have overlapping symptoms, making it hard to know which is causing which symptoms. My esophageal issues with severe reflux and aspiration are caused by my Systemic Sclerosis. I also have Gastroparesis. So, you might continue your search for info. I know it's hard to find doctors who can sort through all this.
I empathize with you and wish you well. Please know that we understand and support you. I've been through some dark times through the years with doctors. In the end, we must realize, the truth exists no matter what a doctor does or doesn't understand. And only the patient can relate their symptoms with accuracy - keep plugging away.
God Bless, Jan
I can totally empathize with your frustration. My dr treated me in a similar way. I don't understand why they think studying something means more than the actual feeling of the disease. My dr. dismissed my symptoms in Aug 2009. I had been going to him since dx in 2/08, but no longer. I saw him for the last time in 10/09 and could not stop thinking about his attitude in Aug. I canceled all future appt, stopped meds and said to hell with him. I have not decided what the next step will be bc exacerbation is moving in fast and furious.
Wishing you the best,
Ronda
Wishing you the best,
Ronda
WOW! I have to say you all have made me feel better. This has taken a toll on me.
Quix -At my November appointment he said it could be PPMS but this time when I reminded him of what he said he told me PPMS has lesions in the c-spine and t-spine area's. I was confused.
He totally disregarded my swallow study that shows aspiration telling me I should be able to eat a normal diet.
He did tell me he wanted my MRI done on HIS machine and read by HIS neuroradiologist. The imaging center is in the same parking lot as the neurological center. The lab he sends me to is in the basement of the neurological center. Everything is on site.
The only instructions he gave me for dropping my medications was to drop a pill a week and to come back to him in 6 months for another MRI. That was it. ??? Another odd thing is the doctor did note the ON but it was not noted on the radiology report.
I am calling to make an appointment with my pcp and psychiatrist tomorrow. It would not be completely unreasonable for me to make an appointment with a good doctor out of state. The doctor who diagnosed me and asked for the psych evaluation retired before I could get back to see him with my report. wonder what would have become of that. Maybe I would be in a different situation right now.
My original doctor was just checking to make sure there were no other issues influencing my symptoms. Needless to say this totally made me ill and I felt like I had just been pushed over the edge.
Thank you so much for jumping in here. Now I have the fight back in me!
JJ- Thanks for the help on the meds. A couple of the medications I am on are for Trigeminal neuralgia. One medication was not controlling the pain. Another is for spasms. I can't say that I have noticed any correlation between my symptoms getting worse and when I start a new medication. Actually I have seen improvement in things as my medications have been adjusted. Yeah....the weight gain is not making me happy!
But that is not only because of the medication. I am not as active as I had been because I just move a lot slower.
Lorelie- thank you for your help....interesting!
Quix -At my November appointment he said it could be PPMS but this time when I reminded him of what he said he told me PPMS has lesions in the c-spine and t-spine area's. I was confused.
He totally disregarded my swallow study that shows aspiration telling me I should be able to eat a normal diet.
He did tell me he wanted my MRI done on HIS machine and read by HIS neuroradiologist. The imaging center is in the same parking lot as the neurological center. The lab he sends me to is in the basement of the neurological center. Everything is on site.
The only instructions he gave me for dropping my medications was to drop a pill a week and to come back to him in 6 months for another MRI. That was it. ??? Another odd thing is the doctor did note the ON but it was not noted on the radiology report.
I am calling to make an appointment with my pcp and psychiatrist tomorrow. It would not be completely unreasonable for me to make an appointment with a good doctor out of state. The doctor who diagnosed me and asked for the psych evaluation retired before I could get back to see him with my report. wonder what would have become of that. Maybe I would be in a different situation right now.
My original doctor was just checking to make sure there were no other issues influencing my symptoms. Needless to say this totally made me ill and I felt like I had just been pushed over the edge.
Thank you so much for jumping in here. Now I have the fight back in me!
JJ- Thanks for the help on the meds. A couple of the medications I am on are for Trigeminal neuralgia. One medication was not controlling the pain. Another is for spasms. I can't say that I have noticed any correlation between my symptoms getting worse and when I start a new medication. Actually I have seen improvement in things as my medications have been adjusted. Yeah....the weight gain is not making me happy!
But that is not only because of the medication. I am not as active as I had been because I just move a lot slower.
Lorelie- thank you for your help....interesting!
One of the less-common sfx of Flomax can be Central nervous system issues. Please read the fine print on this one.
My father took it for a few months -- stopped because it was causing small seizures.
Klonopin is a pretty powerful drug -- sometimes used for anxiety & panis attacks. If you have no mental health issues, why are you on Lexapro (antidepressant) & Klonopin -- even tho you're also taking other anti-pain & anti-spasmotics?
Maybe a good idea to take a look at all your drug interactions...
My father took it for a few months -- stopped because it was causing small seizures.
Klonopin is a pretty powerful drug -- sometimes used for anxiety & panis attacks. If you have no mental health issues, why are you on Lexapro (antidepressant) & Klonopin -- even tho you're also taking other anti-pain & anti-spasmotics?
Maybe a good idea to take a look at all your drug interactions...
This makes me angry. I'm so sorry that you had to go through that experience. That doctor needs a swift kick in the pants. It's quacks like these that give doctors a bad name.
I don't know if you have any medical insurance but another thing you might want to consider is that many insurances have a "quality of care" complaint. They don't want to work with doctors that provide terrible service. I worked for an insurance company before (I know, the enemy) and when someone would tell me a horror story such as this one, I'd always ask if they wanted to file a quality of care complaint. It may not do anything, if they can't prove anything BUT it doesn't hurt to make a note with them about it. If he's treating you this way, he may be doing the same to his other patients.
I agree with everyone else, don't just come off your meds. If your lesions haven't changed, then it's probably due to the meds working. Wait until you can find a new neuro and see what they say. *hugs* Take heart, there are good doctors out there.
I don't know if you have any medical insurance but another thing you might want to consider is that many insurances have a "quality of care" complaint. They don't want to work with doctors that provide terrible service. I worked for an insurance company before (I know, the enemy) and when someone would tell me a horror story such as this one, I'd always ask if they wanted to file a quality of care complaint. It may not do anything, if they can't prove anything BUT it doesn't hurt to make a note with them about it. If he's treating you this way, he may be doing the same to his other patients.
I agree with everyone else, don't just come off your meds. If your lesions haven't changed, then it's probably due to the meds working. Wait until you can find a new neuro and see what they say. *hugs* Take heart, there are good doctors out there.
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
That's a great idea - get referrals from other patients and leave this one behind, far behind!
BTW, Baclofen is also one you have to come off slowly (remember how long it took to get on it?)
Stay the course for now seems to be the unanimous opinion hee.
as always,
L
BTW, Baclofen is also one you have to come off slowly (remember how long it took to get on it?)
Stay the course for now seems to be the unanimous opinion hee.
as always,
L
Hi Tonya,
The weird thing is he titrated me up to 2100 on the klonoptin just in the past 3 weeks. I was on 1200 per day.
I have been waking up with a lot of back and leg pain and klonoptin is what they decided to increase. It has helped!
He said to take it at meal times and bed time but I forget my 6pm dose most of the time. So I am not going to worry about taking that one. I am going to start taking one Klonoptin at noon because it makes me so tired. I take Baclofen at that time also.
That guy had a bad day or something yesterday. I am feeling much better about the situation this evening.
I am going to contact my speech therapist and see if she can tell me who her other MS patients see.
LA
The weird thing is he titrated me up to 2100 on the klonoptin just in the past 3 weeks. I was on 1200 per day.
I have been waking up with a lot of back and leg pain and klonoptin is what they decided to increase. It has helped!
He said to take it at meal times and bed time but I forget my 6pm dose most of the time. So I am not going to worry about taking that one. I am going to start taking one Klonoptin at noon because it makes me so tired. I take Baclofen at that time also.
That guy had a bad day or something yesterday. I am feeling much better about the situation this evening.
I am going to contact my speech therapist and see if she can tell me who her other MS patients see.
LA
Hey there, Me again :)
The Klonopin you are taking is .5 mg 2 times a day which adds up to 1.0 mg (1 mg)
I do know that the Gabapentin is something that you really have to be careful with when coming off of it. It will take a while for you to eventually be completely off of that particular drug. 2100 mg per day is quite a nice size dose. So please be careful if you do decide to stop that one.
That's not to say that you should slowly wheene (sp) off the others too. The Klonopin is in the benzodiazapine family (same as Xanax) so for that be care ful also.
Oh HELL!!!! This converstaion should not even have to be taking place! Your Neuro is a freaking QUACK!
I agree with the others that you should stay on your meds until you see another neuro and get this all sorted out.....I feel for you! What a STRESS! Hopefully this will not throw you in to a flare.....Then would that make him happy??
~Tonya
The Klonopin you are taking is .5 mg 2 times a day which adds up to 1.0 mg (1 mg)
I do know that the Gabapentin is something that you really have to be careful with when coming off of it. It will take a while for you to eventually be completely off of that particular drug. 2100 mg per day is quite a nice size dose. So please be careful if you do decide to stop that one.
That's not to say that you should slowly wheene (sp) off the others too. The Klonopin is in the benzodiazapine family (same as Xanax) so for that be care ful also.
Oh HELL!!!! This converstaion should not even have to be taking place! Your Neuro is a freaking QUACK!
I agree with the others that you should stay on your meds until you see another neuro and get this all sorted out.....I feel for you! What a STRESS! Hopefully this will not throw you in to a flare.....Then would that make him happy??
~Tonya
Ess- My husband said the doctor is taking me off of the meds because he does not believe the symptoms I am having are caused by MS because I do not have enough lesions. Ok, 0.5mg of Klonoptin twice a day. Is that 10 mg? Or 0.10? I don't know. I would like to get off of the anti-depressant however I will say I do get some of that seasonal depression I guess. Not enough sun or light, too much snow. But I have never felt it was bad enough for meds. I am not sure I should even go off of the meds. I need a new neuro fast!
Dennis - I am so sorry you are having problems too. It really stinks!
Supo-You are right and I have not thought about it in those terms. Not a good neuro is he.
Dennis - I am so sorry you are having problems too. It really stinks!
Supo-You are right and I have not thought about it in those terms. Not a good neuro is he.
Hi LATW
So sorry to hear about this very frustrating and all too common scenario.
Tell that sorry excuse for a neurologist that if he doesn't treat the PATIENT raather than the MRI you will sue him for negligence. Perhaps this will sort out his lousy attitude.
So sorry to hear about this very frustrating and all too common scenario.
Tell that sorry excuse for a neurologist that if he doesn't treat the PATIENT raather than the MRI you will sue him for negligence. Perhaps this will sort out his lousy attitude.
Are you sure you are not going to the VA for treatment? This sounds like something they would pull. At my VA the doctors are not allowed to Rx aids to stop smoking. You have to get them through the stop smoking clinic. But when you finally get your PCP to referr you to the stop smoking clinic you find out that there is no one in the clinic that can Rx them unless you happen to be a cancer patient of the LPN there. Of course you don't find this out until the third trip to the clinic as you have to go the first 2 times where they promote the use of stop smoking aids in order to get into the session where you are suppose to be able to get them. Oh the first 2 sessions are reffered to as the stop smoking treatment clinic and where you are suppose to be able to actually get the treaments is reffered to as the stop smoking return clinic.
Sorry about the degress into the VA. I am just so ticked off at them right now. Anyway I hope that you will be able to get someone good with you next Neuro.
Dennis
Sorry about the degress into the VA. I am just so ticked off at them right now. Anyway I hope that you will be able to get someone good with you next Neuro.
Dennis
This situation is maddening. Even if there were such a thing as mild or benign MS, you don't have it! The crazy doctor is counting lesions, saying you don't have enough for all the symptoms you have, and then saying MS is not your main problem??
You definitely need a new neuro. I agree that starting ASAP with your pcp is a good idea, since he knows you and knows you are emotionally stable. See if he can help with another referral, and be sure to tell him all the details of why you need one.
As to your meds, yes, you're on a lot. Don't try to go off them alone. Are you really on 10 mg/day of klonopin? That's a huge dose. Maybe 1 mg?
Lexapro has helped lots of people and has a relatively mild side effects profile. Of course, some will experience bad effects, but as you know, there are lots of meds on the market, so if you need an anti-depressant, there are others to try. I don't think anyone should be on an anti-depressant just as a preventative, unless that person has a history of depression, which you don't.
But once again, don't go off any meds on your own. You have enough on your plate now.
Sending good wishes,
ess
You definitely need a new neuro. I agree that starting ASAP with your pcp is a good idea, since he knows you and knows you are emotionally stable. See if he can help with another referral, and be sure to tell him all the details of why you need one.
As to your meds, yes, you're on a lot. Don't try to go off them alone. Are you really on 10 mg/day of klonopin? That's a huge dose. Maybe 1 mg?
Lexapro has helped lots of people and has a relatively mild side effects profile. Of course, some will experience bad effects, but as you know, there are lots of meds on the market, so if you need an anti-depressant, there are others to try. I don't think anyone should be on an anti-depressant just as a preventative, unless that person has a history of depression, which you don't.
But once again, don't go off any meds on your own. You have enough on your plate now.
Sending good wishes,
ess
Thank you JJ. Lexapro is what I was put on by the MS doctor. I started to clinically progress and he changed me to Prozac. Not good.
So the psychitrist I saw said no to Prozac and put me on Welbutrin. That made me too anxious so this new neuro had me go back on Lexapro. Big weight gain after starting medications 2 years ago. :-(
LA
So the psychitrist I saw said no to Prozac and put me on Welbutrin. That made me too anxious so this new neuro had me go back on Lexapro. Big weight gain after starting medications 2 years ago. :-(
LA
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Why are you on a Atypicle psychotropic drug? Lexopra is FDA approved for sitzaphrenia(sp) or bipolar 1, its used off label without any science behind it. Have you read the horror story i posted about serequel and the issues with the prescribed replasement drug lexopra? Have you by any change been putting on some weight?
Just from my own research it apears that these types of drugs can them selves cause movement disorders, it might be worth checking out if you really need such a strong drug, especially if there are other alternatives. I'm no dr as you know, but if you google Lexopra you'll see why i'm saying this, it alone should be food for thought!
Its now 3am here, slept hours today so thats why i'm up, but i'm not sleeping right, my clock is wonkey lol I'll do some research tomorrow (oops later today) and get back to you. Your on a pretty low dose of lexopra but i still cant work out why you'd get put on this drug, its definetly off label usage and over perscribed. leave it with me and i'll find out if the meds could be causing you more problems, well i'll try anyway.
Cheers......JJ
Just from my own research it apears that these types of drugs can them selves cause movement disorders, it might be worth checking out if you really need such a strong drug, especially if there are other alternatives. I'm no dr as you know, but if you google Lexopra you'll see why i'm saying this, it alone should be food for thought!
Its now 3am here, slept hours today so thats why i'm up, but i'm not sleeping right, my clock is wonkey lol I'll do some research tomorrow (oops later today) and get back to you. Your on a pretty low dose of lexopra but i still cant work out why you'd get put on this drug, its definetly off label usage and over perscribed. leave it with me and i'll find out if the meds could be causing you more problems, well i'll try anyway.
Cheers......JJ
If you weren't next door in Indiana I would guess you are wrapped up with the NHS quagmire in the UK. I didin't think we have benign MS over here! LOL
I still say WTF!?!?
No, please do not stop your drugs. He provided you no plan to come off of them - I am not an expert on any of these but I know enough though that you may have to titrate down your doses to safely avoid withdrawal. I don't see anything out of the ordinary on your drug list or any large amounts. The baclofen is a relatively small dose. Rebif and flomax are ordinary doses. I don't know enough about the other 4 to speak about them. Someone else here I am sure can help.
Do talk to your PCP and find another neurologist. Go in prepared with the information on treating ms, even if it is *benign* and help your PCP to understand the significance of this approach. The odds are your PCP will not be educated on this topic and you will have to provide the schooling.
I am still shaking my head over this one ....
feel better,
Lu
I still say WTF!?!?
No, please do not stop your drugs. He provided you no plan to come off of them - I am not an expert on any of these but I know enough though that you may have to titrate down your doses to safely avoid withdrawal. I don't see anything out of the ordinary on your drug list or any large amounts. The baclofen is a relatively small dose. Rebif and flomax are ordinary doses. I don't know enough about the other 4 to speak about them. Someone else here I am sure can help.
Do talk to your PCP and find another neurologist. Go in prepared with the information on treating ms, even if it is *benign* and help your PCP to understand the significance of this approach. The odds are your PCP will not be educated on this topic and you will have to provide the schooling.
I am still shaking my head over this one ....
feel better,
Lu
I have 10 lesions. I was dx with 7 or 8 lesions 10 years ago, and my Neuro told me that it was benign – benign not it the way that you would think normally, just that is was going to be a slow process – follow?
Fast forward to now……..I now have another 3 lesions on my spine. The major one being on the T10 – hence the reason I am hardly able to walk at all. Totally numb from the waist down, burning sensations 24/7, and really very painful.
My second opinion back in October with another Neuro was wondering if I had MS at all because of the lack of lesions!!! Needless to say I gave him a right rollocking for this:))))) and so he back tracked a bit quick:/
So in a nut shell, I have benign MS – because of the lack of lesions – even though I have constant double vision, unable to walk and urinary retention etc.
My Professer (first Neuro in France) wants me Tysabri ASAP, BUT the local Neuro is wondering if it’s MS or not. My premier neuro in the UK is now retired, but he dx me within a month even though I didn’t have the required ‘X’ amount of lesions.
It just goes to show how these Neuros have so many differences of opinions.
Can you not insist on remaining on DMD’s??
Debs xxx
Fast forward to now……..I now have another 3 lesions on my spine. The major one being on the T10 – hence the reason I am hardly able to walk at all. Totally numb from the waist down, burning sensations 24/7, and really very painful.
My second opinion back in October with another Neuro was wondering if I had MS at all because of the lack of lesions!!! Needless to say I gave him a right rollocking for this:))))) and so he back tracked a bit quick:/
So in a nut shell, I have benign MS – because of the lack of lesions – even though I have constant double vision, unable to walk and urinary retention etc.
My Professer (first Neuro in France) wants me Tysabri ASAP, BUT the local Neuro is wondering if it’s MS or not. My premier neuro in the UK is now retired, but he dx me within a month even though I didn’t have the required ‘X’ amount of lesions.
It just goes to show how these Neuros have so many differences of opinions.
Can you not insist on remaining on DMD’s??
Debs xxx
JJ you got it!!! Even though my muffled attempt to tell you all what happened. I was just so so upset and could not help myself. I just needed a good sleep and some advice from friends.
He said I DO have MS but it is "mild". He told me I have too many clinical symptoms for having just one lesion and ON. I've had ON twice.
My main issues are my vision and my walking. The other major one is aspiration.
He was so weird yesterday. He said if I were aspirating I would have pneumonia all of the time.
I happen to be an expert in that area having had two children with aspiration problems and one on a feeding tube.
Aspiration does NOT mean it is traveling all the way into the lungs although it is getting into the airway. Now if there were PENETRATION also that is the biggie.
That would mean it is getting down into the lungs and pneumonia would be a real issue. However even with my little one who had aspiration with penetration she never developed pneumonia. She was eventually placed on a feeding tube. So he was dreadfully wrong with this issue. I wanted to educate him but decided he was not worth my energy.
It is so confusing that he wants to take me off DMD's when I have a stable MRI just to see if it starts to show something in 6 months.
So if it does show something in 6 months what kind of disability will I be left with?
My pshyc report says I have a mild adjustment disorder related to making life adjustments to my MS diagnosis. It says I am not depressed and have no other mental issues and no history of them. Which is TRUE.
It states that DMD's can cause depression so an antidepressant is being used prophylactically.
The psyc I saw said adjustment disorder does not cause the type of physical symptoms I have.
This doctor wanted me to walk on my heels and toes to exercise. I can NOT even get up on my heels or toes. He had a stupid smirk on his face. My husband was there and he was getting angry.
I think I am going to make an appointment with my PCP to see what he suggests at this point since he is the one who found this doctor for me. My PCP has known me for 20 years now and he knows I am stable. I am not an attention seeker. He knows I am really bad about going to the doc when I really should and that I have always been reluctant to take medications.
Anyway, should I stop my Betaseron or keep taking the shots? Should I really try to work off of the medications that are helping my symptoms? He told me I am on too much for not having the lesions I "should" have.
Here is my list
Betaseron every other day
Gabapentin - total 2100 per day
Flomax
Clonazepam (klonoptin) 10 mg per day
Oxcarbazepin 300 mg twice a day
Baclofen 40 mg per day
Lexapro 10 mg
Is that a lot?
They are helping me. Doctor said I still do have MS even with the stable MRI. What does he WANT???
My husband said he notice on the wall of the room that the doctor had started a new study with MS patients and he thought maybe I did not fit into the right typical MSer.
My husband said he felt like we were basically being shown the door and he really did not want me back.
The only thing I can think of is maybe his nurse was upset with me. Back in October when the doc talked to me about my MRI, when he thought he saw lesions in my brain stem, he talked with me about PPMS because I fit the bill.
So I called the nurse and talked to her several times trying to find out if the doc had talked to the radiologist and come to a conclusion. She got upset with me. I suppose I was being to bothersome to her. You know it was only an MRI and PPMS we were talking about, why would I be calling her about that?! Not a nice lady.
Well, if you made it to the end of all of this thank you so much for the support and suggestions.
I do have MS. Mild according to the doctor. Too many clinical symptoms to all be related to MS according to the doctor. So, now I have to start another doctor search.
LA
He said I DO have MS but it is "mild". He told me I have too many clinical symptoms for having just one lesion and ON. I've had ON twice.
My main issues are my vision and my walking. The other major one is aspiration.
He was so weird yesterday. He said if I were aspirating I would have pneumonia all of the time.
I happen to be an expert in that area having had two children with aspiration problems and one on a feeding tube.
Aspiration does NOT mean it is traveling all the way into the lungs although it is getting into the airway. Now if there were PENETRATION also that is the biggie.
That would mean it is getting down into the lungs and pneumonia would be a real issue. However even with my little one who had aspiration with penetration she never developed pneumonia. She was eventually placed on a feeding tube. So he was dreadfully wrong with this issue. I wanted to educate him but decided he was not worth my energy.
It is so confusing that he wants to take me off DMD's when I have a stable MRI just to see if it starts to show something in 6 months.
So if it does show something in 6 months what kind of disability will I be left with?
My pshyc report says I have a mild adjustment disorder related to making life adjustments to my MS diagnosis. It says I am not depressed and have no other mental issues and no history of them. Which is TRUE.
It states that DMD's can cause depression so an antidepressant is being used prophylactically.
The psyc I saw said adjustment disorder does not cause the type of physical symptoms I have.
This doctor wanted me to walk on my heels and toes to exercise. I can NOT even get up on my heels or toes. He had a stupid smirk on his face. My husband was there and he was getting angry.
I think I am going to make an appointment with my PCP to see what he suggests at this point since he is the one who found this doctor for me. My PCP has known me for 20 years now and he knows I am stable. I am not an attention seeker. He knows I am really bad about going to the doc when I really should and that I have always been reluctant to take medications.
Anyway, should I stop my Betaseron or keep taking the shots? Should I really try to work off of the medications that are helping my symptoms? He told me I am on too much for not having the lesions I "should" have.
Here is my list
Betaseron every other day
Gabapentin - total 2100 per day
Flomax
Clonazepam (klonoptin) 10 mg per day
Oxcarbazepin 300 mg twice a day
Baclofen 40 mg per day
Lexapro 10 mg
Is that a lot?
They are helping me. Doctor said I still do have MS even with the stable MRI. What does he WANT???
My husband said he notice on the wall of the room that the doctor had started a new study with MS patients and he thought maybe I did not fit into the right typical MSer.
My husband said he felt like we were basically being shown the door and he really did not want me back.
The only thing I can think of is maybe his nurse was upset with me. Back in October when the doc talked to me about my MRI, when he thought he saw lesions in my brain stem, he talked with me about PPMS because I fit the bill.
So I called the nurse and talked to her several times trying to find out if the doc had talked to the radiologist and come to a conclusion. She got upset with me. I suppose I was being to bothersome to her. You know it was only an MRI and PPMS we were talking about, why would I be calling her about that?! Not a nice lady.
Well, if you made it to the end of all of this thank you so much for the support and suggestions.
I do have MS. Mild according to the doctor. Too many clinical symptoms to all be related to MS according to the doctor. So, now I have to start another doctor search.
LA
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