Aa
How many of you.....?
Recently someone challenged me that people aren't dismissed, disdained, discarded or humiliated by neurologists as often as I seem to imply. How many of you (with a brief description) have come away from a doctor visit angry, in tears, feeling humilated, or feeling ignored? How many of you have had doctors imply that your symptoms were insignificant or stress-related or imagined?
After the second year that my first "evil" neuro dismissed me as "okay", despite worsening spasticity and then had the gall to suggest that all I wanted was to get medical testing as an attention-seeker (specifically the LP) - I swore that no matter what happen to me, I was never going to risk that with another docotr and cancelled all further appointments. See my Journal entry.
I would just like to see a showing of posts on who has been treated this way.
Quix
After the second year that my first "evil" neuro dismissed me as "okay", despite worsening spasticity and then had the gall to suggest that all I wanted was to get medical testing as an attention-seeker (specifically the LP) - I swore that no matter what happen to me, I was never going to risk that with another docotr and cancelled all further appointments. See my Journal entry.
I would just like to see a showing of posts on who has been treated this way.
Quix
When I spoke to my neurologist regarding my initial test results (they were not helpful test results), I asked her where to go next? There was a silent pause. I said, I'm still having problems, mobility, cogitive etc, and she said something like.. well, we could look at the cognitive problems. Then I told her about my new eye symptom and she sounded enthused for the first time. (I've only had one appointment so far.)
I understand that doctors are scientists. I understand that most of the neurological symptoms that people have can be faked by someone who has researched the symptoms (muscle weakness, some tremors, cognitive function, etc). The symptoms that can clearly be determined to exist and which can not be forced to exist are fairly small in number. I understand that they feel like they need to be vigilant against people with psychiatric and addiction problems. But I also am very aware that the neuro exams they provide are also subjective. If you strip away all of the subjective and the things which are fake-able. There isn't a whole lot left. Even my elevated estrogen count could be faked by taking estrogen.
*However,* they also need to be cognizant of the fact that the human body and brain are enormously complicated and there are a lot of things that science does not yet understand about them. In my opinion, dismissing symptoms as psychosomatic after 1-3 visits is lazy and unprofessional. The research I have done indicates that a tremenous number of neurological problems cause wide-ranging non-specific symptoms and the causes are just as wide ranging. There are a huge number of tests which can be run which typically aren't (for whatever reason -- maybe the doctor thinks its too rare or too expensive or they don't know about it or you have a credibility issue).
The only real luck I have had with doctors is to present evidence that is irrefutable. For example, back in my 20's when I first sought diagnosis for intermittant swelling and pain in joints, my doctor said that my knees looked normal. So, I brought my tape measure to every appointment and he kept track. When he saw a 4" difference in size, he referred me to a neurologist.
I was having a lot of problems when my estrogen started going up. Nausea on the first day of my period, discolored discharge, dizziness, emotional wonkyness (I am usually very even-tempered and calm). I went to a PCP with a subspeciality in endocrinology who told me I was getting old and should expect changes (age 35), to a doctor who thought it was just depression and gave me prozac and xanax, and finally a friend figured out my symptoms (which by then, 3 years later were pretty extreme and included sweats and hot flashes and what not) were cycle related. I told my third doctor I thought I had peri-menopause and she is the first doctor who ordered hormone testing. My estrogen was 4X higher than normal. No wonder I felt bad. After a month or so of testosterone to bring my estrogen down, I was back to normal. It's very annoying and disheartening to deal with people who aren't good at what they do or persistent in doing it. If I did my job that way I wouldn't be employed long.
I am not expecting a lot from this attempt to get a diagnosis. If my doctor suggests it's psychosomatic, I'm going to ask if she is going to refer me for psychological testing to rule that out.
I actually prefer to spend little time concentrating on whatever this is. I find dealing with doctors and disease annoying and would prefer to spend my time and efforts on things I get something out of. I'm not sure how long I can make myself pursue diagnosis, but we'll see.
Jen
I understand that doctors are scientists. I understand that most of the neurological symptoms that people have can be faked by someone who has researched the symptoms (muscle weakness, some tremors, cognitive function, etc). The symptoms that can clearly be determined to exist and which can not be forced to exist are fairly small in number. I understand that they feel like they need to be vigilant against people with psychiatric and addiction problems. But I also am very aware that the neuro exams they provide are also subjective. If you strip away all of the subjective and the things which are fake-able. There isn't a whole lot left. Even my elevated estrogen count could be faked by taking estrogen.
*However,* they also need to be cognizant of the fact that the human body and brain are enormously complicated and there are a lot of things that science does not yet understand about them. In my opinion, dismissing symptoms as psychosomatic after 1-3 visits is lazy and unprofessional. The research I have done indicates that a tremenous number of neurological problems cause wide-ranging non-specific symptoms and the causes are just as wide ranging. There are a huge number of tests which can be run which typically aren't (for whatever reason -- maybe the doctor thinks its too rare or too expensive or they don't know about it or you have a credibility issue).
The only real luck I have had with doctors is to present evidence that is irrefutable. For example, back in my 20's when I first sought diagnosis for intermittant swelling and pain in joints, my doctor said that my knees looked normal. So, I brought my tape measure to every appointment and he kept track. When he saw a 4" difference in size, he referred me to a neurologist.
I was having a lot of problems when my estrogen started going up. Nausea on the first day of my period, discolored discharge, dizziness, emotional wonkyness (I am usually very even-tempered and calm). I went to a PCP with a subspeciality in endocrinology who told me I was getting old and should expect changes (age 35), to a doctor who thought it was just depression and gave me prozac and xanax, and finally a friend figured out my symptoms (which by then, 3 years later were pretty extreme and included sweats and hot flashes and what not) were cycle related. I told my third doctor I thought I had peri-menopause and she is the first doctor who ordered hormone testing. My estrogen was 4X higher than normal. No wonder I felt bad. After a month or so of testosterone to bring my estrogen down, I was back to normal. It's very annoying and disheartening to deal with people who aren't good at what they do or persistent in doing it. If I did my job that way I wouldn't be employed long.
I am not expecting a lot from this attempt to get a diagnosis. If my doctor suggests it's psychosomatic, I'm going to ask if she is going to refer me for psychological testing to rule that out.
I actually prefer to spend little time concentrating on whatever this is. I find dealing with doctors and disease annoying and would prefer to spend my time and efforts on things I get something out of. I'm not sure how long I can make myself pursue diagnosis, but we'll see.
Jen
Dear Quixotic1
My expericnec has been similar to yours!! AFter being dismissed locally, I travelled a great distance only to be again dismissed at a highly esteemed institution. Based on experience, in my opinion, neurologists:doctors as divorce attorneys:lawyers (they are, with few exceptions, a cut below).
Yesterday, though, I tried a new neuro recommended by my PCP's office. She actually listened to me (because last week I was in the ER with stroke-like symptoms of blurred right eye vision, sudden extreme right-sided weakness, and mental fog). Yesterday, she agreed I had lost muscle strength in my hip flexors and yesterday I had a positive Romberg and could not heel-to-toe at all. She has ordered an MRI (because, of course, the estimed ER, like most other ERs, only uses CT scan for stroke-alert patients - what a JOKE - they are so unreliable for brain issues!).
Can't get an aswer about whether or not my surgical clips from my thyroidectomy are feromagnetic or not, but a radiologist said it doesn't matter at this point because after nine years, enough scar tissue would have formed to hold them in place during MRI).
So, am continuuing the fight for an answer. Years of waiting is agonizing (as you know). I am so thankfu that you are willing to speak out, as a physician, on how other MDs (neuros) are treating patients seeking answers. Thank you for validating our concerns with your experience!!
Hugs!!
WAF
My expericnec has been similar to yours!! AFter being dismissed locally, I travelled a great distance only to be again dismissed at a highly esteemed institution. Based on experience, in my opinion, neurologists:doctors as divorce attorneys:lawyers (they are, with few exceptions, a cut below).
Yesterday, though, I tried a new neuro recommended by my PCP's office. She actually listened to me (because last week I was in the ER with stroke-like symptoms of blurred right eye vision, sudden extreme right-sided weakness, and mental fog). Yesterday, she agreed I had lost muscle strength in my hip flexors and yesterday I had a positive Romberg and could not heel-to-toe at all. She has ordered an MRI (because, of course, the estimed ER, like most other ERs, only uses CT scan for stroke-alert patients - what a JOKE - they are so unreliable for brain issues!).
Can't get an aswer about whether or not my surgical clips from my thyroidectomy are feromagnetic or not, but a radiologist said it doesn't matter at this point because after nine years, enough scar tissue would have formed to hold them in place during MRI).
So, am continuuing the fight for an answer. Years of waiting is agonizing (as you know). I am so thankfu that you are willing to speak out, as a physician, on how other MDs (neuros) are treating patients seeking answers. Thank you for validating our concerns with your experience!!
Hugs!!
WAF
Wow!
I get so frustrated over my experiences and now feel guilty because there are so many worse ones out there.
My fave dismissal was "I'll do any tests you want but they will be inconclusive." He then proceeded to tell me to "suck it up." and "the pain filter in my brain doesn't work."
I have another appt with someone else (recommended by a forum member no less) on 8/12. I'm horribly nervous.
Keep fighting all.
Heather
I get so frustrated over my experiences and now feel guilty because there are so many worse ones out there.
My fave dismissal was "I'll do any tests you want but they will be inconclusive." He then proceeded to tell me to "suck it up." and "the pain filter in my brain doesn't work."
I have another appt with someone else (recommended by a forum member no less) on 8/12. I'm horribly nervous.
Keep fighting all.
Heather
Same here over a 20 year span.
In 1989 all of my tests came back negitive so Dr. Dx was CFIDS.
in 1993 All tests were again negative so Dx was migrains (Was not having headaches of any kind). Was given migrain Rx which gave me severe migrain headaches.
in 2001 MRI showed brain atrophy Dx was fibromialgia.
in 2006 Doctor said I could nbot have MS because I'm not a 35 y.o. female.
In 2008 3 doctors again told me the same thing about age and sex despite sx and exam indicated neuro problems.
Latest in current Neuro notes doctor states that I probably have had RRMS that has become SPMS.
Dennis
In 1989 all of my tests came back negitive so Dr. Dx was CFIDS.
in 1993 All tests were again negative so Dx was migrains (Was not having headaches of any kind). Was given migrain Rx which gave me severe migrain headaches.
in 2001 MRI showed brain atrophy Dx was fibromialgia.
in 2006 Doctor said I could nbot have MS because I'm not a 35 y.o. female.
In 2008 3 doctors again told me the same thing about age and sex despite sx and exam indicated neuro problems.
Latest in current Neuro notes doctor states that I probably have had RRMS that has become SPMS.
Dennis
Count me in. First neuro in Navy stated tests were false positive. I was sent to the shrink world. This first neuro dismissed cognitive, balance, sensory, and loss of taste sensations as a shrink issue and/or panic episodes. He didn't include them in his report. All my LPs back then were positive for Obands. I have never had a negative LP for O-bands
The VA never followed up on it. They did give me a VEP once, it was negative and said no further testing necessary, I didn't have MS. Regarded first Navy neuro's statement as gospel. The never followed up on brain images or LPs although I had repeatedly asked for the LP so they could compare to the Navy tests. This is documented by the way. More psych visits although the history of physical issues would still occur.
Third neuro told me to go enjoy life although my equilibrium issues, headaches and sensory issues were coming on strong then. He did weak MRIs and said nothing there and that migraines were causing the questionable images seen on the weak MRIs. He wanted to know if I had ever had a head trauma. Maybe in high school I think, so he decided that was the cause of whatever he saw in the images. Suggested I take up yoga and that my problem was soft tissue injury and depression.
Fourth neuro wasn't much better. His thoughts were I had CFS or fibro and migraines and couldn't handle stress very well. I told him about the Navy and O-bands and stuff and he dismissed that. But he did opt for a MRI of my brain due to the chronic fatigue I was having. I said if the MRI shows something then can we do the LP to see if I still have the CSF inflammation. He agreed although I don't think he thought the MRI was going to show anything because he said as much. Well, it did show something and he kept his word and had the LP ordered. And sure enough, O-bands >5. Second MRIs at 1.0T returned "demyelinating disease". He called me at home a month later suggesting DMDs. I opted for a second opinion, he agreed, and off to the VA in LA to a MS clinic I was sent.
Saw two neuro's there. One said my issue was migraines, this was a younger doctor. He couldn't listen to anything I was saying as his mind was made up, YOU HAVE MIGRAINES! Neither of them had the O-Band report - go figure that is why I was sent there!. But I had them, hand carried the paperwork. After the physical and history intake I showed the older neuro the Navy LP results for O-bands and the latest one. That ended that visit. He said that is not normal and we need to get another set of MRIs over time, run more tests to rule other things and find out what is causing the CSF inflammation. The younger neuro got in my face on my way out and was still trying to force the issue that my problem was migraines! I don't see him anymore.
Then in May, the older neuro sent me DMD literature to study to choose one and said it is a good to idea to start one due to he was almost positive I have RRMS.
Then in June, his office called and said they wanted another LP because the other one was false! Sound familiar? This is the same BS the Navy neuro pulled. Of course it wasn't negative. We finally got that corrected and now he wants another set of MRIs. More excuses and more tests. To the back burner of the VA system I've been placed again.
This older neuro in LA has said at times he thinks I have benign MS, then RRMS, then tests are negative when they are positive. Now, he says if there are no new lesions, or changes then that means I may not MS and they don't need to treat me. From what I have researched and read on this forum that is plain nonsense.
With that in mind, I sent a request to my local neuro and his boss to have these next set of MRIs at 3T. If they really and truly want to get to the bottom of my issue, diagnosis me and provide treatment then they should not have a problem with the 3T. Why the heck keep doing .7 and 1.0T series with regards to my particular situation and trying to make a diagnosis. Otherwise, it looks like to me and others, they don't want to diagnose it.
I've come away from some of these visits with enough anger that is crippling, often times just plain humiliated and at a total loss. The only way not to feel humiliated is to stand your ground and get mad, but at the VA that is not a wise thing to do. You'd be surprised what they write in those records. Feeling ignored? One doctor here just typed away every time I saw him, did half arse physicals and made smart arse statements that due to I was born in a sterotypical slow southern state, I couldn't handle stress very well. Then he said, you know the VA has spent considerable money on you and they aren't going to find anything wrong with you. This is just prior to the brain MRIs and LP. He doesn't make those statements anymore.
Almost all of them have implied that my symptoms were insignificant or stress-related or imagined! No wonder they never wanted to do those tests all these years. Now that they have and they are positive they are still covering someone's arse and leaving me out to dry in limbo land. That is my take, otherwise like Doc Q stated here once, if they can spend all these years telling you what isn't wrong with you they certainly could spend that time trying to get to a diagnosis and treatment plan.
I had to contact the VA and request them to explain why the VA wouldn't even put these test results in the history section of my record so doctors could see them. Sure they are on a computer system somewhere but if you don't know that and don't know where to look doctors won't see them. And they use that line a lot too, "I can't pull up your records"!
I know you asked for a short note, and I didn't do that, sorry.
There ya have it Doc Q.
The VA never followed up on it. They did give me a VEP once, it was negative and said no further testing necessary, I didn't have MS. Regarded first Navy neuro's statement as gospel. The never followed up on brain images or LPs although I had repeatedly asked for the LP so they could compare to the Navy tests. This is documented by the way. More psych visits although the history of physical issues would still occur.
Third neuro told me to go enjoy life although my equilibrium issues, headaches and sensory issues were coming on strong then. He did weak MRIs and said nothing there and that migraines were causing the questionable images seen on the weak MRIs. He wanted to know if I had ever had a head trauma. Maybe in high school I think, so he decided that was the cause of whatever he saw in the images. Suggested I take up yoga and that my problem was soft tissue injury and depression.
Fourth neuro wasn't much better. His thoughts were I had CFS or fibro and migraines and couldn't handle stress very well. I told him about the Navy and O-bands and stuff and he dismissed that. But he did opt for a MRI of my brain due to the chronic fatigue I was having. I said if the MRI shows something then can we do the LP to see if I still have the CSF inflammation. He agreed although I don't think he thought the MRI was going to show anything because he said as much. Well, it did show something and he kept his word and had the LP ordered. And sure enough, O-bands >5. Second MRIs at 1.0T returned "demyelinating disease". He called me at home a month later suggesting DMDs. I opted for a second opinion, he agreed, and off to the VA in LA to a MS clinic I was sent.
Saw two neuro's there. One said my issue was migraines, this was a younger doctor. He couldn't listen to anything I was saying as his mind was made up, YOU HAVE MIGRAINES! Neither of them had the O-Band report - go figure that is why I was sent there!. But I had them, hand carried the paperwork. After the physical and history intake I showed the older neuro the Navy LP results for O-bands and the latest one. That ended that visit. He said that is not normal and we need to get another set of MRIs over time, run more tests to rule other things and find out what is causing the CSF inflammation. The younger neuro got in my face on my way out and was still trying to force the issue that my problem was migraines! I don't see him anymore.
Then in May, the older neuro sent me DMD literature to study to choose one and said it is a good to idea to start one due to he was almost positive I have RRMS.
Then in June, his office called and said they wanted another LP because the other one was false! Sound familiar? This is the same BS the Navy neuro pulled. Of course it wasn't negative. We finally got that corrected and now he wants another set of MRIs. More excuses and more tests. To the back burner of the VA system I've been placed again.
This older neuro in LA has said at times he thinks I have benign MS, then RRMS, then tests are negative when they are positive. Now, he says if there are no new lesions, or changes then that means I may not MS and they don't need to treat me. From what I have researched and read on this forum that is plain nonsense.
With that in mind, I sent a request to my local neuro and his boss to have these next set of MRIs at 3T. If they really and truly want to get to the bottom of my issue, diagnosis me and provide treatment then they should not have a problem with the 3T. Why the heck keep doing .7 and 1.0T series with regards to my particular situation and trying to make a diagnosis. Otherwise, it looks like to me and others, they don't want to diagnose it.
I've come away from some of these visits with enough anger that is crippling, often times just plain humiliated and at a total loss. The only way not to feel humiliated is to stand your ground and get mad, but at the VA that is not a wise thing to do. You'd be surprised what they write in those records. Feeling ignored? One doctor here just typed away every time I saw him, did half arse physicals and made smart arse statements that due to I was born in a sterotypical slow southern state, I couldn't handle stress very well. Then he said, you know the VA has spent considerable money on you and they aren't going to find anything wrong with you. This is just prior to the brain MRIs and LP. He doesn't make those statements anymore.
Almost all of them have implied that my symptoms were insignificant or stress-related or imagined! No wonder they never wanted to do those tests all these years. Now that they have and they are positive they are still covering someone's arse and leaving me out to dry in limbo land. That is my take, otherwise like Doc Q stated here once, if they can spend all these years telling you what isn't wrong with you they certainly could spend that time trying to get to a diagnosis and treatment plan.
I had to contact the VA and request them to explain why the VA wouldn't even put these test results in the history section of my record so doctors could see them. Sure they are on a computer system somewhere but if you don't know that and don't know where to look doctors won't see them. And they use that line a lot too, "I can't pull up your records"!
I know you asked for a short note, and I didn't do that, sorry.
There ya have it Doc Q.
I will also jump in and add to the discussion.
YES I have had very poor experience with neurologists and have been very angry...to the point that I never went back to them. Even my MOM has been angry at one of them.
The first neuro that I saw was during my first hospitalization. My mom was there and he was very concerned and told me that it was probable MS. He said that even though the MRI is clear right now...it probably won't stay that way. He stated on my discharge report "Clinical MS."
But then I saw him for my follow-up after I left the hospital. He spent five minutes with me saying that nothing was different and we'd repeat the MRIs ever couple years. I asked what could be done about my symptoms and he just wanted to prescribe me an anti-depressant despite the fact that I told him I didn't want one and wasn't depressed.
He wasn't all that bad...but that 5 minute visit in his office really bothered me. I was rushed out and had no plan of action.
Neuro #2 was absolutely terrible. My PCP thought possible seizures after a blackout spell I had and couldn't remember (my mom found me unconscious and unresponsive). I had an EEG (which he read and discussed the results with my PCP) and it was "abnormal" and I was started on anti-seizure meds and told I couldn't drive. Well...almost a month later I finally met with the man for the first time. Mom went with me...as I couldn't drive per his orders. He said it was just abnormal...not indicative of seizures. So he was going to repeat the EEG (the first was sleep-deprived and the second was not...so comparing them was kinda stupid). He completely dismissed all my questions about my MS symptoms and provided no explanations or suggestions.
My follow-up appointment with him was even worse. He continued to dismiss me and did not even seem interested in discussing it. He seemed to just rush through the neuro exam and didn't really pay attention to anything I said. *I* had to ask him for the repeat MRI. He was just going to do it of my brain and *I* had to ask him to do my c-spine. And he *refused* to do my L-spine. As I was scheduling the MRI...I told them that I needed all my records as I would be going to another neuro.
Then came the part that made me even more mad. Reading through his notes...I was absolutely LIVID. Even though several of the neuro exams were clearly abnormal...he listed everything as normal. He stated that my pupils were equal size...yet it's CLEAR to look at them and see that they're not (anyone could see this). He also stated "normal" results for tests that he never even did. I have had a lot of problems with lack of sensation. Well...all he did was tap his fingers on each side of my face and asked if it felt the same on both sides. I said "I don't know...I think so?" because when it's dull it's really hard to tell. And that's all he did. But in his notes he stated that it was normal to "light touch, pinprick, vibratory, and position sense" Yet he didn't even do pinprick or anything! He LIED on my health records and it just makes me SO mad.
I'm preparing to meet with Neuro #3 and I really hope for a better experience.
YES I have had very poor experience with neurologists and have been very angry...to the point that I never went back to them. Even my MOM has been angry at one of them.
The first neuro that I saw was during my first hospitalization. My mom was there and he was very concerned and told me that it was probable MS. He said that even though the MRI is clear right now...it probably won't stay that way. He stated on my discharge report "Clinical MS."
But then I saw him for my follow-up after I left the hospital. He spent five minutes with me saying that nothing was different and we'd repeat the MRIs ever couple years. I asked what could be done about my symptoms and he just wanted to prescribe me an anti-depressant despite the fact that I told him I didn't want one and wasn't depressed.
He wasn't all that bad...but that 5 minute visit in his office really bothered me. I was rushed out and had no plan of action.
Neuro #2 was absolutely terrible. My PCP thought possible seizures after a blackout spell I had and couldn't remember (my mom found me unconscious and unresponsive). I had an EEG (which he read and discussed the results with my PCP) and it was "abnormal" and I was started on anti-seizure meds and told I couldn't drive. Well...almost a month later I finally met with the man for the first time. Mom went with me...as I couldn't drive per his orders. He said it was just abnormal...not indicative of seizures. So he was going to repeat the EEG (the first was sleep-deprived and the second was not...so comparing them was kinda stupid). He completely dismissed all my questions about my MS symptoms and provided no explanations or suggestions.
My follow-up appointment with him was even worse. He continued to dismiss me and did not even seem interested in discussing it. He seemed to just rush through the neuro exam and didn't really pay attention to anything I said. *I* had to ask him for the repeat MRI. He was just going to do it of my brain and *I* had to ask him to do my c-spine. And he *refused* to do my L-spine. As I was scheduling the MRI...I told them that I needed all my records as I would be going to another neuro.
Then came the part that made me even more mad. Reading through his notes...I was absolutely LIVID. Even though several of the neuro exams were clearly abnormal...he listed everything as normal. He stated that my pupils were equal size...yet it's CLEAR to look at them and see that they're not (anyone could see this). He also stated "normal" results for tests that he never even did. I have had a lot of problems with lack of sensation. Well...all he did was tap his fingers on each side of my face and asked if it felt the same on both sides. I said "I don't know...I think so?" because when it's dull it's really hard to tell. And that's all he did. But in his notes he stated that it was normal to "light touch, pinprick, vibratory, and position sense" Yet he didn't even do pinprick or anything! He LIED on my health records and it just makes me SO mad.
I'm preparing to meet with Neuro #3 and I really hope for a better experience.
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