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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
I'm so glad that you started this thread. It will be hard for me, but I will try to be brief. I have seen a total of 8 neuros!!! No, I am not a doctor shopper, or a difficult patient. I'm quite pleasant, perhaps too pleasant.
Neuro 1 said sx sure sounded like MS did an LP when it came back negative he had his receptionist call me with the results. No follow up appointment was offered. I had one lesion done on an open MRI from an ER trip. This neuro didn't offer any other testing besides the LP.
Neuro 2 He made me feel as if he was going to help me. He ordered another Brain MRI, and C and T spine MRI's. His nurse told me my MRI showed "mild subcortical white matter disease". I had a rushed follow up which turned out to be his last apt of the day. He just did an EMG and Nerve conduction test...those were normal. I told him about my extreme fatigue (not even one of my worst sx) he then said I must have CFS.
Neuro 3. I saw a female doctor who did a very brief (maybe 5 minute) exam. She had me breath real heavily, then asked if I had any tingling. I said yes my mouth tingled (wouldn't most people if they were hyperventilating?). So, she said I had anxiety and depression and she sent a letter to my PCP saying I needed to be on AD. She wouldn't let me explain that my sx were different.
Neuro 4. Also acted as if he'd help me. They always seemed to be more interested at that first visit. He ordered another series of MRI's and redid the EMG...all of them were normal. At my second visit he was very patronizing. His whole demeanor had changed. My eye had been closing forcefully, which was out of my control. My eye doctor said it was a neurological problem she sent him a letter regarding it. One of the tests she did was to have me look up (it's a test for MG) whenever I did that my eye would close. I made the mistake of showing this neuro that and he thought I was doing it on purpose. He wrote in his notes that it was psychogenic because when he talked (distracted) me I didn't do it. He didn't understand what I was trying to show him.
Anyway the letter from the eye doctor made him sit up and take notice. He sent me to a Neuro muscular disease neuro. Before I got in to see this neuro though I had an episode of bed wetting and bowel incontinence. When I called his office the nurse said he couldn't see me since he'd already referred me somewhere else.????? This guy was local the new guy was three hours away.
Neuro 5. Very nice. Said not NMD sounds like MS to him. Said it just might not be showing up on tests yet. Unfortunately, he couldn't see me again because he only sees NMD patients.
Neuro 6 Another woman neuro. She also thought MS was a possibility. She ordered evoked potentials. The visual ones came back with a slight delay in one eye, but still within normal limits. This neuro actually talked to me on the phone. She said I needed to find a local neuro to work with me (I'd tried) as she felt I needed to be followed long term and seen often.
Neuro 7 Traveled to a major MS center. A place that was known for thinking outside the box. Drove 7 hours...neuro spent 15 or 20 min with me. Said MS wasn't likely even though by this time I'd had more positive tests. Wanted me to see a urologist and a neuropsych. I did and both showed problems similar to those seen in MS. Due to the distance and a change in my DH's job, I wasn't able to return to him.
Neuro 8 Finally found a keeper. Says MRI shows well delineated white matter changes. I show signs of a neurological disease...possibly demyelinating. She isn't quite ready to dx me, but says she will follow me. Which is all I've really wanted!!!!
Sorry I wasn't so brief. But, I think my story is unique. I have become more and more disabled finally getting SSDI after a three year fight. I know something is terribly wrong and I just want answers and treatment.
So, Quix, I think you are right in your assessment. Thanks for letting me share.
Shalynn
Neuro 1 said sx sure sounded like MS did an LP when it came back negative he had his receptionist call me with the results. No follow up appointment was offered. I had one lesion done on an open MRI from an ER trip. This neuro didn't offer any other testing besides the LP.
Neuro 2 He made me feel as if he was going to help me. He ordered another Brain MRI, and C and T spine MRI's. His nurse told me my MRI showed "mild subcortical white matter disease". I had a rushed follow up which turned out to be his last apt of the day. He just did an EMG and Nerve conduction test...those were normal. I told him about my extreme fatigue (not even one of my worst sx) he then said I must have CFS.
Neuro 3. I saw a female doctor who did a very brief (maybe 5 minute) exam. She had me breath real heavily, then asked if I had any tingling. I said yes my mouth tingled (wouldn't most people if they were hyperventilating?). So, she said I had anxiety and depression and she sent a letter to my PCP saying I needed to be on AD. She wouldn't let me explain that my sx were different.
Neuro 4. Also acted as if he'd help me. They always seemed to be more interested at that first visit. He ordered another series of MRI's and redid the EMG...all of them were normal. At my second visit he was very patronizing. His whole demeanor had changed. My eye had been closing forcefully, which was out of my control. My eye doctor said it was a neurological problem she sent him a letter regarding it. One of the tests she did was to have me look up (it's a test for MG) whenever I did that my eye would close. I made the mistake of showing this neuro that and he thought I was doing it on purpose. He wrote in his notes that it was psychogenic because when he talked (distracted) me I didn't do it. He didn't understand what I was trying to show him.
Anyway the letter from the eye doctor made him sit up and take notice. He sent me to a Neuro muscular disease neuro. Before I got in to see this neuro though I had an episode of bed wetting and bowel incontinence. When I called his office the nurse said he couldn't see me since he'd already referred me somewhere else.????? This guy was local the new guy was three hours away.
Neuro 5. Very nice. Said not NMD sounds like MS to him. Said it just might not be showing up on tests yet. Unfortunately, he couldn't see me again because he only sees NMD patients.
Neuro 6 Another woman neuro. She also thought MS was a possibility. She ordered evoked potentials. The visual ones came back with a slight delay in one eye, but still within normal limits. This neuro actually talked to me on the phone. She said I needed to find a local neuro to work with me (I'd tried) as she felt I needed to be followed long term and seen often.
Neuro 7 Traveled to a major MS center. A place that was known for thinking outside the box. Drove 7 hours...neuro spent 15 or 20 min with me. Said MS wasn't likely even though by this time I'd had more positive tests. Wanted me to see a urologist and a neuropsych. I did and both showed problems similar to those seen in MS. Due to the distance and a change in my DH's job, I wasn't able to return to him.
Neuro 8 Finally found a keeper. Says MRI shows well delineated white matter changes. I show signs of a neurological disease...possibly demyelinating. She isn't quite ready to dx me, but says she will follow me. Which is all I've really wanted!!!!
Sorry I wasn't so brief. But, I think my story is unique. I have become more and more disabled finally getting SSDI after a three year fight. I know something is terribly wrong and I just want answers and treatment.
So, Quix, I think you are right in your assessment. Thanks for letting me share.
Shalynn
OK, here is the list: This concerns the experiences of Craig.
Mayo Clinic Nov.2006: you look like you are developing a neurological disease but have a normal EMG. Come back when you are worse. Are you sure you're not perceiving the leg weakness and just don't want to lift your legs?? He was very embarassed.
Cleveland Clinic, August 2007: Craig was told that the brain lesions and brain atrophy are normal for a man of 50. The MS neuro there didn't think there was anything wrong with having a positive Romberg and let Craig fall to the floor in the hallway where she did the Romberg test as she stood 10 feet away from him. She thought his inability to walk with one foot in front of the other and loss of balance was totally normal and he must just be stressed out. She said maybe it is sleep apnea!!!!!????? Once again, humiliation and disgust as we paid a pretty penny to go there.
July 2007, NJ neuro number one: oh it is just paresthetica meralgia. Not really my problem. Go back to the endocrinologist. He never even looked at the brain MRI cd nor did he do a complete neuro exam.
September 2007, NJ neuro number two: When the LP came back normal, he said there is no way you have MS and must be depressed. That is why you can't lift your legs!
Oct. 2007, Natl Institute of Health: After Craig was initially told by a NIH neuro who had three other NIH neuros look at the brain cd's tell him he has Normal Pressure Hydrocephalus and "black holes" and brain atrophy, the NIH neuro later changed his story and told Craig that he is just perceiving his leg weakness. You need to see a psychiatrist for severe depression. This was said to Craig even after a NIH physiatrist and neuro-opthamologist and occupational therapist documented that Craig presents like PPMS. The NIH neuro would not listen to anyone and dismissed all of Craig's symptoms because he no longer had a participant for his NPH study. The neuro was so obnoxious that they practically had a straight jacket in the room when the psychiatrist came in. He went from having just one level of leg function on admission to NIH to being a total psych case three days later. Talk about humiliating....
December 2007, Jefferson Univ hospital, Philadelphia PA; The neuro there said that it looks like MS but he needed to talk to another neuro. He comes back in the room and said "I don't need to give you a diagnosis yet. You didn't come here in a wheelchair and you are still trying to work. We have others coming here who are more debilitated than you. They come first. Besides, you really don't want to know what is wrong with you. Trust me. I know what is best for you." "It is much better not knowing". OK, now we were both disgusted and humiliated.
March 2008, Neuro said there was no MS because out of the 20 lesions present, only four are greater than 3mm. So he just has an abnormal brain MRI with leg weakness and no MS. He then told Craig that he was causing his own spasticity and should loosen up his legs. Who would want leg spasticity??
March 2008. Neuro at Univ of Maryland MS center. he finally was the one who said it looks like MS but does not want to diagnose it yet and wants to see if high dose vitamin D will help. Told to come back in October for a follow up. But he did order a brain MRI for this week.
In the almost two years since this started, the neuros have totally disregarded the fact that a man of age 50 cannot run, walk, or move his legs in the water to swim. They do not care one bit. Craig has gone form being an optimistic person who thought that the neuros would help him, to being a totally disheartened man with little faith in conventional medicine. I never thought a person could lose so much function while the doctors did nothing.
Elaine
Mayo Clinic Nov.2006: you look like you are developing a neurological disease but have a normal EMG. Come back when you are worse. Are you sure you're not perceiving the leg weakness and just don't want to lift your legs?? He was very embarassed.
Cleveland Clinic, August 2007: Craig was told that the brain lesions and brain atrophy are normal for a man of 50. The MS neuro there didn't think there was anything wrong with having a positive Romberg and let Craig fall to the floor in the hallway where she did the Romberg test as she stood 10 feet away from him. She thought his inability to walk with one foot in front of the other and loss of balance was totally normal and he must just be stressed out. She said maybe it is sleep apnea!!!!!????? Once again, humiliation and disgust as we paid a pretty penny to go there.
July 2007, NJ neuro number one: oh it is just paresthetica meralgia. Not really my problem. Go back to the endocrinologist. He never even looked at the brain MRI cd nor did he do a complete neuro exam.
September 2007, NJ neuro number two: When the LP came back normal, he said there is no way you have MS and must be depressed. That is why you can't lift your legs!
Oct. 2007, Natl Institute of Health: After Craig was initially told by a NIH neuro who had three other NIH neuros look at the brain cd's tell him he has Normal Pressure Hydrocephalus and "black holes" and brain atrophy, the NIH neuro later changed his story and told Craig that he is just perceiving his leg weakness. You need to see a psychiatrist for severe depression. This was said to Craig even after a NIH physiatrist and neuro-opthamologist and occupational therapist documented that Craig presents like PPMS. The NIH neuro would not listen to anyone and dismissed all of Craig's symptoms because he no longer had a participant for his NPH study. The neuro was so obnoxious that they practically had a straight jacket in the room when the psychiatrist came in. He went from having just one level of leg function on admission to NIH to being a total psych case three days later. Talk about humiliating....
December 2007, Jefferson Univ hospital, Philadelphia PA; The neuro there said that it looks like MS but he needed to talk to another neuro. He comes back in the room and said "I don't need to give you a diagnosis yet. You didn't come here in a wheelchair and you are still trying to work. We have others coming here who are more debilitated than you. They come first. Besides, you really don't want to know what is wrong with you. Trust me. I know what is best for you." "It is much better not knowing". OK, now we were both disgusted and humiliated.
March 2008, Neuro said there was no MS because out of the 20 lesions present, only four are greater than 3mm. So he just has an abnormal brain MRI with leg weakness and no MS. He then told Craig that he was causing his own spasticity and should loosen up his legs. Who would want leg spasticity??
March 2008. Neuro at Univ of Maryland MS center. he finally was the one who said it looks like MS but does not want to diagnose it yet and wants to see if high dose vitamin D will help. Told to come back in October for a follow up. But he did order a brain MRI for this week.
In the almost two years since this started, the neuros have totally disregarded the fact that a man of age 50 cannot run, walk, or move his legs in the water to swim. They do not care one bit. Craig has gone form being an optimistic person who thought that the neuros would help him, to being a totally disheartened man with little faith in conventional medicine. I never thought a person could lose so much function while the doctors did nothing.
Elaine
One of the things I have tried to be careful of is appearing to WANT a dx of MS but how do you do that when you have to fight for a dx?
When you are begging for some one to listen but they won't.
I know that probably sounds ridiculous. Who would want a DX of MS?
I think a few of those who are dx'd quickly or easily might get the wrong idea from those who have struggled for a DX. Maybe it appears we are wanting a dx of MS?
Maybe it is more difficult to accept when you are blind sided by a diagnosis.
I don't know but I have run into some people on other sites who seem very angry and have very little time or tolerance for those who are trying so hard to get someone to listen.
Hope this made sense.
LA
I know everyone here just wants to know WHAT the problem is. MS or something else.
When you are begging for some one to listen but they won't.
I know that probably sounds ridiculous. Who would want a DX of MS?
I think a few of those who are dx'd quickly or easily might get the wrong idea from those who have struggled for a DX. Maybe it appears we are wanting a dx of MS?
Maybe it is more difficult to accept when you are blind sided by a diagnosis.
I don't know but I have run into some people on other sites who seem very angry and have very little time or tolerance for those who are trying so hard to get someone to listen.
Hope this made sense.
LA
I know everyone here just wants to know WHAT the problem is. MS or something else.
I just wanted to say that my heart goes out to you and Craig. Yours is a such a heartbreaking story.
Something has to be done take make sure this never happens again. Maybe getting our stories out is a first step.
My thoughts and prayers are with you both. Hopefully, the new brain MRI will give more answers (although what do they want? Geeezzz). I have four lesions, but since my MRI has remained stable over several years they aren't willing to dx. Anyway, I hope this new neuro gives you the answers you all so desperately need.
Something has to be done take make sure this never happens again. Maybe getting our stories out is a first step.
My thoughts and prayers are with you both. Hopefully, the new brain MRI will give more answers (although what do they want? Geeezzz). I have four lesions, but since my MRI has remained stable over several years they aren't willing to dx. Anyway, I hope this new neuro gives you the answers you all so desperately need.
I'm on this list too!
The first neuro I went to told me as he enter the room that I had nothing to worry about even though my MRI was abnormal. That there was nothing wrong with me. Back last year, I thought that maybe I was suffering from seizures or even TIAs but he said that there was nothing to fear without laying a hand on me. He said all this, without doing an exam. My doctors in another state believed I had focal seizures but didn't rule out other possibilities but he said that they did not know what they were talking about. He said that their knowledge was under his.
My second neuro was better. He just couldn't come up with answers. His nurse wasn't nice though. She acted like I shouldn't have nothing to complain about since I had no DX even though the doctor saw abnormalities on exam (ex spasticity). When she would call to tell me my results, I would ask, "So what do we do now?" and she would say, "Why, what are you doing now?" Like my problems just up and stopped.
My third neuro was by far the worse and supposedly the best place. I tried to go see a MS specialist but the thing was you have to be DX with MS to go to the clinic. I'm not. So they referred me to their neuro center. I thought at least I got my foot in the door and they have good equipment. I went and was told by the student, who I had an appointment with, that I had some MS symptoms and a possible lesion that my second neuro failed to tell me about on my c-spine. When her over-seeing neuro came in he totally brushed me off. He told me nothing was wrong with me. I had nothing life threatening but he would repeat the MRI of the spine and brain. When I asked what I was suffering from if not from MS or an autoimmune, he said "stress"!
I cancelled my appointment because I later found out that instead of putting me on their 3T, they were putting me on their oldest 1.5T which I could easily go to around where I live instead of traveling an hour. It wasn't worth the drive. A couple of weeks later, I was in the hospital because of multiple blood clots in my leg. But you know that's only stress!!! Nothing life threatening according to the doc at the teaching hospital that was on the top doctors list of 2006. lol
The first neuro I went to told me as he enter the room that I had nothing to worry about even though my MRI was abnormal. That there was nothing wrong with me. Back last year, I thought that maybe I was suffering from seizures or even TIAs but he said that there was nothing to fear without laying a hand on me. He said all this, without doing an exam. My doctors in another state believed I had focal seizures but didn't rule out other possibilities but he said that they did not know what they were talking about. He said that their knowledge was under his.
My second neuro was better. He just couldn't come up with answers. His nurse wasn't nice though. She acted like I shouldn't have nothing to complain about since I had no DX even though the doctor saw abnormalities on exam (ex spasticity). When she would call to tell me my results, I would ask, "So what do we do now?" and she would say, "Why, what are you doing now?" Like my problems just up and stopped.
My third neuro was by far the worse and supposedly the best place. I tried to go see a MS specialist but the thing was you have to be DX with MS to go to the clinic. I'm not. So they referred me to their neuro center. I thought at least I got my foot in the door and they have good equipment. I went and was told by the student, who I had an appointment with, that I had some MS symptoms and a possible lesion that my second neuro failed to tell me about on my c-spine. When her over-seeing neuro came in he totally brushed me off. He told me nothing was wrong with me. I had nothing life threatening but he would repeat the MRI of the spine and brain. When I asked what I was suffering from if not from MS or an autoimmune, he said "stress"!
I cancelled my appointment because I later found out that instead of putting me on their 3T, they were putting me on their oldest 1.5T which I could easily go to around where I live instead of traveling an hour. It wasn't worth the drive. A couple of weeks later, I was in the hospital because of multiple blood clots in my leg. But you know that's only stress!!! Nothing life threatening according to the doc at the teaching hospital that was on the top doctors list of 2006. lol
First Neuro did not take me seriously. Told my GP that i indicated i was no longer having dizzyspells. Not true. In fact they were quite bad at that time. Also, he told her that my MRI showed normal even though i had two changes in lesions in the span of 6 months and one was periventricular, ovoid and 8 to 9 mm. I had all the classic symptoms. Why would he dismiss a patient like that?
2nd neuro I only saw once. He added an LP then (due to insurance change) I had to move to Neruo 3.
Neuro 3 seemed to have no choice but to diagnose me with MS because he could not ignore the MRI's and the fact that my LP indicated I had greater than 5 obligoclonal bands. I know that he would have dismissed me if I had not had the LP. He was determined to minimize my issues and says I have benign MS. Atleast he will treat.
2nd neuro I only saw once. He added an LP then (due to insurance change) I had to move to Neruo 3.
Neuro 3 seemed to have no choice but to diagnose me with MS because he could not ignore the MRI's and the fact that my LP indicated I had greater than 5 obligoclonal bands. I know that he would have dismissed me if I had not had the LP. He was determined to minimize my issues and says I have benign MS. Atleast he will treat.
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