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
COMMUNITY LEADER
Lulu you must of heard me from over here, WTF indeed!!! :(
LA: so you have MS but because the neuro can't associate your symptoms to the number of lessions you have, he's summised you must also have a mental illness. Now did i get that right, really am I not totally confused here, this really didn't happen surely, what an utter w_a_n_k_e_r!
From what i can work out, this neuro is under the impression he knows more than all the research, he's got the head up their butt syndrome, hard to believe in this day and age but unfortunately it does still happen. lol
Mistake 1: lessions have not been able to be mapped to symptoms, some yes, all no.
Mistake 2: lack of insight that the 2 years of DMD could be doing their job.
Mistake 3: Attributing YOUR DX MS to a mental illness, even dispite a professional in that field giving you a clean bill of mental health. Oh and your reaction to your consult is perfectly NORMAL!!!
Mistake 4: Dismissing objectionable and therfore REAL sx because the MRI doesn't show it, in the places he is expecting because he thinks he knows more than all the studies todate.
Mistake 5: Removing DMD's so the lesions will show up enough for him and then he can justify the cost or dx to whom ever it is, thats a nausty thought and i hope its wrong.
Oh hex, i could go on all blooming day, please dont stop the dmd's, it just doesn't make any sense, twilight zone music playing in the back ground, to loopy to be logical.
Cheers......JJ
LA: so you have MS but because the neuro can't associate your symptoms to the number of lessions you have, he's summised you must also have a mental illness. Now did i get that right, really am I not totally confused here, this really didn't happen surely, what an utter w_a_n_k_e_r!
From what i can work out, this neuro is under the impression he knows more than all the research, he's got the head up their butt syndrome, hard to believe in this day and age but unfortunately it does still happen. lol
Mistake 1: lessions have not been able to be mapped to symptoms, some yes, all no.
Mistake 2: lack of insight that the 2 years of DMD could be doing their job.
Mistake 3: Attributing YOUR DX MS to a mental illness, even dispite a professional in that field giving you a clean bill of mental health. Oh and your reaction to your consult is perfectly NORMAL!!!
Mistake 4: Dismissing objectionable and therfore REAL sx because the MRI doesn't show it, in the places he is expecting because he thinks he knows more than all the studies todate.
Mistake 5: Removing DMD's so the lesions will show up enough for him and then he can justify the cost or dx to whom ever it is, thats a nausty thought and i hope its wrong.
Oh hex, i could go on all blooming day, please dont stop the dmd's, it just doesn't make any sense, twilight zone music playing in the back ground, to loopy to be logical.
Cheers......JJ
WTF? That is not the news I ever want anyone to hear.
What he has said to you shows:
1. his sorry lack of knowledge of MS
2. his lack of understanding the significance of dmd's and what we hope they will do for us. I just saw my neuro for the review of my annual MRI and we were both pleased that I had no new lesions and my brain is quiet. He didn't tell me I don't have MS anymore, we were happy the dmd did what it was suposed to do.
3. his total lack of compassion and bed side manner.
The posts above make some excellent points and I hope you will take the time to write a letter about this care.
Changing doctors is never fun and not something to be done lightly, but in this case it is necessary. It sounds like you will need to travel to see an MS specialist - it is well worth the effort.
Please take a deep breath and then regroup. At the very least you need a second opinion.
we're with you on this one,
Lulu
What he has said to you shows:
1. his sorry lack of knowledge of MS
2. his lack of understanding the significance of dmd's and what we hope they will do for us. I just saw my neuro for the review of my annual MRI and we were both pleased that I had no new lesions and my brain is quiet. He didn't tell me I don't have MS anymore, we were happy the dmd did what it was suposed to do.
3. his total lack of compassion and bed side manner.
The posts above make some excellent points and I hope you will take the time to write a letter about this care.
Changing doctors is never fun and not something to be done lightly, but in this case it is necessary. It sounds like you will need to travel to see an MS specialist - it is well worth the effort.
Please take a deep breath and then regroup. At the very least you need a second opinion.
we're with you on this one,
Lulu
2 years is a long time to be on DMD's, and my wondering mind is roaming.....
1) can injecting these DMD's in to one who does NOT have MS be dangerous?
2) This guy a total idiot and so uncaring! I'm sorry to say that and I probably
should not say that but this is your health at stake!
3) Would he treat one of his own family members like this?
Jensequitur and bio; That is just what I though....there is NO such thing as
MILD ms! Either you have it or you don't!
I'm sending BIG hugs your way. Please believe that you will find another neuro
that will be of great value to you (and has a brain) and will get you back on the
right road in treating your MS.
Take Care,
~Tonya
1) can injecting these DMD's in to one who does NOT have MS be dangerous?
2) This guy a total idiot and so uncaring! I'm sorry to say that and I probably
should not say that but this is your health at stake!
3) Would he treat one of his own family members like this?
Jensequitur and bio; That is just what I though....there is NO such thing as
MILD ms! Either you have it or you don't!
I'm sending BIG hugs your way. Please believe that you will find another neuro
that will be of great value to you (and has a brain) and will get you back on the
right road in treating your MS.
Take Care,
~Tonya
Horrible!!!! Sorry, you should definately report him!!! Sometimes I wonder????? Doctors are well schooled but that doesn't mean they are smart!!!! Think of it this way, even like me, I work hard even though most days I feel like poop, I am in the service idustry and I always treat everyone with respect, I really care about what people are getting for there money, I wouldn't expect anyone to buy anything I wouldn't sell to my own children, but then you have a coworker just doesn't share any of the same values you have and you just don't get it!!!! Some Doctors just have to be that way too!!! It's pure ignorance maybe!!! Or just incapable!!! It's just not right!!!! I can't see how you could trust that doctor ever!!! I wonder if it might have to do with the cost, maybe an insurance issue, anybody else any ideas on that???? Take care Hun!!!!
Bio makes good sense to me. Of course, the hospital that told me they were going to pursue my complaint against neuro #3 hasn't returned a call for several months.
Roasting's too good for this one. Run him through the shredder on his way into the dumpster.
Roasting's too good for this one. Run him through the shredder on his way into the dumpster.
Iiiiiiiiiiiit's Fridaaaaaaaaay!! Time to ROAST this weenie - the coals are ready. Good 'n' hot!
I know this is a lousy time of year for a road trip or flying, but check out NYU.
Hoisting a foamy pint in your honor. Nobody should be treated as atrociously as you have!
Guitar_grrrl
I know this is a lousy time of year for a road trip or flying, but check out NYU.
Hoisting a foamy pint in your honor. Nobody should be treated as atrociously as you have!
Guitar_grrrl
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