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
Recently, since all the tests have come back negative for MS and he doesn't believe in lyme disease in OK, I am now starting to get "those comments" like:
Lets see...are you making this up??? Well,,,,you aren't really that "type". When he called w/my negative LP results he threw in there "I sure WISH you were just cooking all this up"
I KNOW where this is headed and luckily I don't really need him anymore!
Yeah, people really WANT the LP for attention- How Ridiculous!!(it took him 3 tries on me and my back is still sore!)
Bottom line: They start throwing this **** out there when THEY have no other answer for you! As far as I am concerned you can count me in on this one.
Stacey
Lets see...are you making this up??? Well,,,,you aren't really that "type". When he called w/my negative LP results he threw in there "I sure WISH you were just cooking all this up"
I KNOW where this is headed and luckily I don't really need him anymore!
Yeah, people really WANT the LP for attention- How Ridiculous!!(it took him 3 tries on me and my back is still sore!)
Bottom line: They start throwing this **** out there when THEY have no other answer for you! As far as I am concerned you can count me in on this one.
Stacey
To those that don't know, I am a limbo lander still, but now have been to a neuro who is fairly certain that what I have is MS. He has sent me on now to a new MS specialist and I am awaiting further testing.
My first neuro was a nimrod nimcompoop who it seems had an ego bigger than his brain. Because of an issue with another fellow neuro who mentioned possible MS to me without his say so, he seemed to go out of his way to say it wasn't. My 2 MRIs that he had done in 2 years were both without contrast. Even though my first was with my spine and there seemed to be a spot of uncertainty, my next MRI did not include the spine.My brain he said had 3 UBOs. No other testing was done other then an EEG which came back normal. He never did any in office testing on me at any time and left me with probably not MS. Dismissed and discarded.
When I lost my ability to speak normal last August, I ended up at a local hospital where the neuro there claimed that I had a mental disorder and should see a psychiatrist.Humiliated and disdained. He did a 5 minute in office test and said that there was nothing wrong with me even though the doc on call that I saw at first said that I had weakness in my legs, my right hand and had notable dysatharia as well as extreme left leg tremors. This neuro claimed that the upcoming MRI that the ER doc ordered would not show anything. Well it did, I went from having 3 lesions to 8 lesions.
I did not go to anybody after this as I was so tired and fed up by then. I was finished with these boneheads that couldn't give a rat's patooti about what is wrong with me. I had not only one who dismissed me but two. I shudder to think how low I felt after that and the tears that I shed.
Thank goodness for this forum who helped me find my fight again and with the help of a stranger, got into a new neuro who has took me seriously.
Moki
My first neuro was a nimrod nimcompoop who it seems had an ego bigger than his brain. Because of an issue with another fellow neuro who mentioned possible MS to me without his say so, he seemed to go out of his way to say it wasn't. My 2 MRIs that he had done in 2 years were both without contrast. Even though my first was with my spine and there seemed to be a spot of uncertainty, my next MRI did not include the spine.My brain he said had 3 UBOs. No other testing was done other then an EEG which came back normal. He never did any in office testing on me at any time and left me with probably not MS. Dismissed and discarded.
When I lost my ability to speak normal last August, I ended up at a local hospital where the neuro there claimed that I had a mental disorder and should see a psychiatrist.Humiliated and disdained. He did a 5 minute in office test and said that there was nothing wrong with me even though the doc on call that I saw at first said that I had weakness in my legs, my right hand and had notable dysatharia as well as extreme left leg tremors. This neuro claimed that the upcoming MRI that the ER doc ordered would not show anything. Well it did, I went from having 3 lesions to 8 lesions.
I did not go to anybody after this as I was so tired and fed up by then. I was finished with these boneheads that couldn't give a rat's patooti about what is wrong with me. I had not only one who dismissed me but two. I shudder to think how low I felt after that and the tears that I shed.
Thank goodness for this forum who helped me find my fight again and with the help of a stranger, got into a new neuro who has took me seriously.
Moki
I was dismissed and treated like an interrogation by a neuro near my home, as well as one @ CCF. Both declared that the clear MRI done extremely early in this journey being clean meant that I absolutely could not possibly have MS, and that at the time being 41 meant I was too old to possibly have MS. At least I was never accused of being neurotic or anything of that like. I was dismissed to rheumy and endocrinology, who both declared that this is neurological not their specialty. Also sent to rule out seizures. Been temporarily dx'd with migraine assoc vertigo and parkinson's associated dyskinesia. I did see a 3rd neuro, whose first question was "have you always been fat?" - that was also her last. Tried to see 2 who would not even see me without being already Dx'd.
Now I hold out hope for this new neuro - I know good ones exist.
Now I hold out hope for this new neuro - I know good ones exist.
I've had a neuro tell me that my problem was half real and half "conversion disorder." I've since then had another neuro who assured me that there isn't a chance in hell that it's conversion disorder (which I intellectually knew), but that first one temporarily undermined my considerable confidence with that assertion. Yes, I felt dismissed, disdained, and humiliated by that experience. Absolutely. And I didn't go back.
And I could list here several other people among my acquaintance who have had similarly dismissive and humiliating experiences with their neurologists--not even the same doctors among them. In fact, I just talked to one woman today who's hesitant to call her neuro about the side effects of her medication because she thinks her neuro will be mad at her and dismiss her concerns, that having been this particular neuro's M.O. from the beginning.
Bio
And I could list here several other people among my acquaintance who have had similarly dismissive and humiliating experiences with their neurologists--not even the same doctors among them. In fact, I just talked to one woman today who's hesitant to call her neuro about the side effects of her medication because she thinks her neuro will be mad at her and dismiss her concerns, that having been this particular neuro's M.O. from the beginning.
Bio
When I first developed ON my eye doctor did and eye exam and kind of patted me on the head saying it was just aging.
A week later I called him back and told him I was getting worse. He brought me back in and told me he now thought it was ON, but lets wait a few weeks to see if it gets better. If you were "younger" I'd worry about MS (I had just turned 44 at the time)
I finally got him to send me to a specialist. ON was confirmed. I had an abnormal MRI.
The first Neurologist I saw told me the spots on my MRI were from high BP. She would not even address my other issues. I am not a small flower. This doctor was a very tiny petite woman and not much bigger around than my leg but boy did I feel small walking out of her office.
I decided to find another doctor because I was not getting better and my PCP was not happy with the first neuros assessment.
The next neuro tried to blame my problems on me being " a good parent". Ok, but I have ON and spots on my MRI. At that point my PCP was really pushing me to get to a MS doctor. But my insurance did not cover. This all happen last year.
Just after the first of this year I developed ON again after having been really sick at Christmas. We had new insurance and my PCP sent me directly to the MS clinic. I was dx'd the first time I saw the MS doctor. She was horrified at the fact I'd been put off and not started on DMD's.
My story is very simple and moved very quickly compared to what many others are subjected to. If it had not been for my PCP I may have accepted I am a "good but over stressed parent". I am one of the lucky ones.
LA
A week later I called him back and told him I was getting worse. He brought me back in and told me he now thought it was ON, but lets wait a few weeks to see if it gets better. If you were "younger" I'd worry about MS (I had just turned 44 at the time)
I finally got him to send me to a specialist. ON was confirmed. I had an abnormal MRI.
The first Neurologist I saw told me the spots on my MRI were from high BP. She would not even address my other issues. I am not a small flower. This doctor was a very tiny petite woman and not much bigger around than my leg but boy did I feel small walking out of her office.
I decided to find another doctor because I was not getting better and my PCP was not happy with the first neuros assessment.
The next neuro tried to blame my problems on me being " a good parent". Ok, but I have ON and spots on my MRI. At that point my PCP was really pushing me to get to a MS doctor. But my insurance did not cover. This all happen last year.
Just after the first of this year I developed ON again after having been really sick at Christmas. We had new insurance and my PCP sent me directly to the MS clinic. I was dx'd the first time I saw the MS doctor. She was horrified at the fact I'd been put off and not started on DMD's.
My story is very simple and moved very quickly compared to what many others are subjected to. If it had not been for my PCP I may have accepted I am a "good but over stressed parent". I am one of the lucky ones.
LA
YES, count me in on this one!
My first Neuro kept shaking his head "NO" to everything on my list of symptoms (that I presented in the form of a timeline that spanned the last twelve years.)
He started to thrash himself around in his chair and said, "Now, if you were moving like this, then I might think you had something neurologically wrong."
Other than that - he pricked a couple of my toes w/ a pin. Even though I have a lot of numbness in my foot - he considered "all was normal" since I felt the pin *****!
I left the appointment in tears. : (
Julia
My first Neuro kept shaking his head "NO" to everything on my list of symptoms (that I presented in the form of a timeline that spanned the last twelve years.)
He started to thrash himself around in his chair and said, "Now, if you were moving like this, then I might think you had something neurologically wrong."
Other than that - he pricked a couple of my toes w/ a pin. Even though I have a lot of numbness in my foot - he considered "all was normal" since I felt the pin *****!
I left the appointment in tears. : (
Julia
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.
Hmmm, I am not diagnosed. Maybe I don't have MS.
First neuro bounced in (I was in hospital) announced I had MS, then bounced out again. Only his resident examined me and saw the MRI (very briefly in the ER). He took back his diagnosis later when all the testing came back negative or insignificantly positive (that was just a VEP that showed some abnormality). No LP done.
Second neuro, was pleasant. Did a 2 minute examination and said that she couldn't diagnose because I didn't have enough clinical signs. Though she could give me antidepressants if I wanted. She didn't want to do a LP unless I had more symptoms because LP could be very painful. Anway, I could come back in 3 months and let her know how I was going.
I never went back. That was 9 months ago. Most of my 'neurological' symptoms have settled down to fairly low and infrequent level. I am finding out other health issues, which may be more likely than MS. Will see.
Cheers all.
Sally
First neuro bounced in (I was in hospital) announced I had MS, then bounced out again. Only his resident examined me and saw the MRI (very briefly in the ER). He took back his diagnosis later when all the testing came back negative or insignificantly positive (that was just a VEP that showed some abnormality). No LP done.
Second neuro, was pleasant. Did a 2 minute examination and said that she couldn't diagnose because I didn't have enough clinical signs. Though she could give me antidepressants if I wanted. She didn't want to do a LP unless I had more symptoms because LP could be very painful. Anway, I could come back in 3 months and let her know how I was going.
I never went back. That was 9 months ago. Most of my 'neurological' symptoms have settled down to fairly low and infrequent level. I am finding out other health issues, which may be more likely than MS. Will see.
Cheers all.
Sally
Neuro #1 disagreed with neuroradiologist that said my brain MRI was most likely MS. He said my brain was atrophied by alcohol use in my teen years, that I refused to tell him my history when I brought several pages, MRIs, reports, etc. He said he didn't believe I had tremors, and more.
Neuro #2 did more testing, but on the third visit (why did I go back?) I left feeling belittled and at fault, blamed for wasting their time and resources, etc. She dismissed my abnormal neuro exam points (the exam was brief), shrugged off any attempt to get to the root of my neurological issues, and told me to go back to my PCP.
Last time I saw my PCP (10 years of good relationship) looked at me and said "You look depressed". I explained that I was frustrated , but mostly I was fatigued. At least when I called today and explained my vision issue and melting fatigue of this weekend, she worked me into her schedule for tomorrow morning.
That is the very brief form; I've said it all in much more detail but am trying to let it go.
Kathy
Neuro #2 did more testing, but on the third visit (why did I go back?) I left feeling belittled and at fault, blamed for wasting their time and resources, etc. She dismissed my abnormal neuro exam points (the exam was brief), shrugged off any attempt to get to the root of my neurological issues, and told me to go back to my PCP.
Last time I saw my PCP (10 years of good relationship) looked at me and said "You look depressed". I explained that I was frustrated , but mostly I was fatigued. At least when I called today and explained my vision issue and melting fatigue of this weekend, she worked me into her schedule for tomorrow morning.
That is the very brief form; I've said it all in much more detail but am trying to let it go.
Kathy
I have fibro, a mimic of MS, along with other neurological symptoms. My Internal Medicine dr told me she didn't believe in fibro, and that it was all in my head, and offered anti-depressants. I left her office and never went back. I got a new PCP who treats many fibro pts. I did end up on anti-depressant, as they help with the nerve pain, but not because of it being "all in my head".
Maggie
Maggie
I’ve been to one neuro. When I walked in, he told me (without looking at the MRI) that I was too old to have MS. I was 62 at the time. He went out of his way to talk in medical terminology, with a smirk on his face, knowing I simply must be bowled over by his ‘intelligence’. His nurse kept telling us how brilliant he was and gaa-gaaed over him until I finally realised that she really had a ‘thing’ for this rather over-inflated individual.
I wasn’t impressed with him at all. His report to my doctor was interesting. He wondered if I didn’t have conversion disorder. I was ripped. During my last visit to him he told me that he was 99% certain that I didn’t have MS.
The MRI’s that I had were both done wrong, so I asked him about that and so how could he be certain. Well, one just doesn’t question such a self proclaimed god. I listened to him and told him at the end of his tirade, that I just didn’t believe him, that he hadn’t proved anything to me one way or another. (In the first report he had questioned several areas in the brain) What happened to that? I had a positive Visual Evoke Potential that was dismissed also.
Shalynn, I think I need to go to a few more neuros. You inspire me.
I called the MS Society and related what had happened and asked them if older people like myself ‘got MS’. She said of course they did. She had just heard from a woman of 70. This got me going to do research on the internet. I found out that I was not alone.
I’m reading all these posts and really feel for you all. You are all giving me courage to not give up.
Charley
The 1st docs where in the ER , 06 I had faint four or five times in two days and off balance and confusion . Did not see neuro Conclusion I was stressed. Sent me to a cardiologist. ( heart fine)
I found a pcp who said mercury poisoning and tx. for 1 1/2 yrs. , thousands of $ . The nurses said I was the sickest person they had seen . So I started pushing for answers, the pcp says its now stress. :) God help me!!
Then I found this place.
!st neuro wouldn't even come in the exam rm when he read the possibility of mercury .
2nd neuro refused to do t-spine when ordering mri. Just smiled at me as if I were a child , " I know what is best". He never did more than a four min. exam. He discounted all of my lesions , said my neuro problems were either from sleep deprivation ( I saw sleep sp. and I am not ) or complication from hep-c..
The hep sp. in town would not see me , hep not active and I did not have a fever ??
Neuropsychologist said significant right hand weakness , significant deficits in cognition but I also had somatoform problem. I had a 2nd neuro-pychologist look at the data and she said it wasn't somatoform , I tested that way because I was sick ...
I now have a good pcp and a good neuro who are fining answers.
Sorry about the space at the end hit the wrong key.. :):)
Its mind boggling that there are people out there ( even ones with illnesses) who don't get or see or believe that this is happening to so many of us , Its truly heartbreaking what so many of the patient population has to put up with
Penn - thanks for the laugh ' have you always been fat ' lmaf . I can relate..
Love and prayers ( for us all )
Jo
I found a pcp who said mercury poisoning and tx. for 1 1/2 yrs. , thousands of $ . The nurses said I was the sickest person they had seen . So I started pushing for answers, the pcp says its now stress. :) God help me!!
Then I found this place.
!st neuro wouldn't even come in the exam rm when he read the possibility of mercury .
2nd neuro refused to do t-spine when ordering mri. Just smiled at me as if I were a child , " I know what is best". He never did more than a four min. exam. He discounted all of my lesions , said my neuro problems were either from sleep deprivation ( I saw sleep sp. and I am not ) or complication from hep-c..
The hep sp. in town would not see me , hep not active and I did not have a fever ??
Neuropsychologist said significant right hand weakness , significant deficits in cognition but I also had somatoform problem. I had a 2nd neuro-pychologist look at the data and she said it wasn't somatoform , I tested that way because I was sick ...
I now have a good pcp and a good neuro who are fining answers.
Sorry about the space at the end hit the wrong key.. :):)
Its mind boggling that there are people out there ( even ones with illnesses) who don't get or see or believe that this is happening to so many of us , Its truly heartbreaking what so many of the patient population has to put up with
Penn - thanks for the laugh ' have you always been fat ' lmaf . I can relate..
Love and prayers ( for us all )
Jo
I've seen 2 neuros.
The first one told me that I think I have a disease, but I don't. He told me that my MRI would not change over time, and not to follow up with him even if my symptoms progress/recur. (This is why I went back to him after the clear MRI. My symptoms re-appeared and worsened after a 1 month break.) He ordered a spinal tap, but I never got it done because he told me it would be wasting everyone'e time.
Neuro #2 is willing to follow up with me, but I think he is just placating me and not listening much. He told me "not to worry" about the progression of symptoms and my heat sensitivity. Says the cramping in my legs could be coffee. But does want me to come back in two months, so I'm sticking with him for now. He said this could be something like fibro, but I don't really know much about that.
I am 29, I first went to the doctor for paresthesias in Jan 08. I first noticed odd sensations last summer, not long after a bout of infections back-to-back including bronchitis, sinusitis, and ear infections.
The first one told me that I think I have a disease, but I don't. He told me that my MRI would not change over time, and not to follow up with him even if my symptoms progress/recur. (This is why I went back to him after the clear MRI. My symptoms re-appeared and worsened after a 1 month break.) He ordered a spinal tap, but I never got it done because he told me it would be wasting everyone'e time.
Neuro #2 is willing to follow up with me, but I think he is just placating me and not listening much. He told me "not to worry" about the progression of symptoms and my heat sensitivity. Says the cramping in my legs could be coffee. But does want me to come back in two months, so I'm sticking with him for now. He said this could be something like fibro, but I don't really know much about that.
I am 29, I first went to the doctor for paresthesias in Jan 08. I first noticed odd sensations last summer, not long after a bout of infections back-to-back including bronchitis, sinusitis, and ear infections.
Well I'm not alone. Hi everyone. Yes I had a pitty party and a bad one at that. Bob came and got me so I could read all this.
I have been dealing with bone heads for about 20 years. I have been told it is all in your mind to it is only your diabetes acting up. And so here I go again. I swear the doctors off then when all this stuff comes back with vengeance I go again.
I have seen 3 neuros since 2007. the first said I do have MS because of the MRI and the neuro testing but the second said I don't so the first took the MS away he said it was because my LP was negative.
I have been sent back to another neuro. My eye doctor sent me do to vertical double vision and eye pain. This neuro had me come in at 11:00 and we were done at 11:30. He asked questions and the cut me off. Never completed my family history. and Only checked my walking which he noticed I do have a balance problem. Duh!! And did the tuning fork but only on the left side twice. Never the right side. I was made to feel stupid and dumb and that I was lying about all of this.
I wonder do these doctors take a course in how to ignore their patience? My sister had this problem in 1978 and through the 80's. They have never changed.
Need to go we are going back to the bone head.
Bob will let you all know how it wnet.
thanks for caring.
Elizabeth
I have been dealing with bone heads for about 20 years. I have been told it is all in your mind to it is only your diabetes acting up. And so here I go again. I swear the doctors off then when all this stuff comes back with vengeance I go again.
I have seen 3 neuros since 2007. the first said I do have MS because of the MRI and the neuro testing but the second said I don't so the first took the MS away he said it was because my LP was negative.
I have been sent back to another neuro. My eye doctor sent me do to vertical double vision and eye pain. This neuro had me come in at 11:00 and we were done at 11:30. He asked questions and the cut me off. Never completed my family history. and Only checked my walking which he noticed I do have a balance problem. Duh!! And did the tuning fork but only on the left side twice. Never the right side. I was made to feel stupid and dumb and that I was lying about all of this.
I wonder do these doctors take a course in how to ignore their patience? My sister had this problem in 1978 and through the 80's. They have never changed.
Need to go we are going back to the bone head.
Bob will let you all know how it wnet.
thanks for caring.
Elizabeth
I, too, had a bad experience at CCF. I had 3 neuros, one opthalmologist, on PT, and one PCP here who all believed and documented the fact that I have a neurological illness. I'm just atypical, so no one was willing to say MS.
Despite a bunch of brain lesions, way abnormal neuro exam (+Rhomberg, hyperreflexia, clonus, ataxic gait, torsional nystagmus, spasticity, etc.), mimics ruled out, the CCF neuro told me I don't have MS and proceeded to tell me to take my Baclofen for the spasticity, take the Provigil for fatigue and get therapy.
He told me that there are many people who don't ever get answers and I would be one of those people. He also went on to tell me that I was overprepared with my organized file and timeline and that was a sign that I was too focused on this illness. He told me that I needed therapy to get past this. He also went on to try to minimize my signs and sx and made it seem like I was making myself worse by focusing so much.
In his dictation to my doctors, he actually acknowledged that MS was a possibility, but that since my MRI hadn't changed in a year, it probably wasn't. He also noted a couple of possible lesions that no one else had ever noted near one of the ventricles, but yet was so completely dismissive with me.
Essentially, I left there in shock and in tears. Quix described this as soul crushing and I totally agree that was the best description of how I felt. I not only crushed me, I ceased to get any help at all except for therapy. The psychologist is the one who convinced me that I needed to go back to a neuro because she said there was no way I was making this worse by being too focused.
My current neuro is great in a lot of ways, but is still hung up on my atypical lesions and won't give me an official MS dx. He calls it atypical MS or CNS Demyelinating Disease. He does treat my sx and has had me on pulsed IVSM to keep me stable.
Since I met Quix on another board, I came over here trying to work through how to start over with this doc to try and get him to look at my whole case again from the beginning.
This whole limbo thing is frustrating and disheartening and yes soul crushing at times. LATW mentions people on other boards who don't have tolerance for people in limbo and that has been a sore spot for me. Some people who got a quick dx just don't have any concept about what we deal with and they can be quite rude about it. I actually had one member on a board PM me telling me I had no business posting about disability issues since I don't even have a real dx.
I do think that we are a minority of people and I think the bad neuros are a minority, but the impact is major. There are far too many of us that have been dismissed and discouraged by doctors. One doctor treating people badly and getting away with it is one too many. One person suffering in silence for years in fear because of bad treatment by a doctor is one too many!
Despite a bunch of brain lesions, way abnormal neuro exam (+Rhomberg, hyperreflexia, clonus, ataxic gait, torsional nystagmus, spasticity, etc.), mimics ruled out, the CCF neuro told me I don't have MS and proceeded to tell me to take my Baclofen for the spasticity, take the Provigil for fatigue and get therapy.
He told me that there are many people who don't ever get answers and I would be one of those people. He also went on to tell me that I was overprepared with my organized file and timeline and that was a sign that I was too focused on this illness. He told me that I needed therapy to get past this. He also went on to try to minimize my signs and sx and made it seem like I was making myself worse by focusing so much.
In his dictation to my doctors, he actually acknowledged that MS was a possibility, but that since my MRI hadn't changed in a year, it probably wasn't. He also noted a couple of possible lesions that no one else had ever noted near one of the ventricles, but yet was so completely dismissive with me.
Essentially, I left there in shock and in tears. Quix described this as soul crushing and I totally agree that was the best description of how I felt. I not only crushed me, I ceased to get any help at all except for therapy. The psychologist is the one who convinced me that I needed to go back to a neuro because she said there was no way I was making this worse by being too focused.
My current neuro is great in a lot of ways, but is still hung up on my atypical lesions and won't give me an official MS dx. He calls it atypical MS or CNS Demyelinating Disease. He does treat my sx and has had me on pulsed IVSM to keep me stable.
Since I met Quix on another board, I came over here trying to work through how to start over with this doc to try and get him to look at my whole case again from the beginning.
This whole limbo thing is frustrating and disheartening and yes soul crushing at times. LATW mentions people on other boards who don't have tolerance for people in limbo and that has been a sore spot for me. Some people who got a quick dx just don't have any concept about what we deal with and they can be quite rude about it. I actually had one member on a board PM me telling me I had no business posting about disability issues since I don't even have a real dx.
I do think that we are a minority of people and I think the bad neuros are a minority, but the impact is major. There are far too many of us that have been dismissed and discouraged by doctors. One doctor treating people badly and getting away with it is one too many. One person suffering in silence for years in fear because of bad treatment by a doctor is one too many!
I left an appt. barely able to contain the tears until I got to my car, then I cried hard for 10 mins. or so until I could drive. I am not a cryer by nature. I was ready to give up, convinced I had become a hypochondriac. Thank God I have a wonderful husband who reminded me of some very real symptoms and of who I am and what I am not. There are doctors out there who should not be, as they lack the ability to listen or feel compassion.
Add me to your list.
Samsgam
Add me to your list.
Samsgam
you can add me to the list...I have seen approx 3 Neuro...2 of them were so rude and didn't even want to listen to me...they checked me over quickly... told me there is nothing they could do for me and see my own GP.
I felt like they wanted me out of their office NOW... They had no concern over how I was feeling (pain)..or my off balance with walking.
after three years..I have a Rhuem who thinks I need to see another Neurol...but he is not going to leave me stranded...he said he will help figure this out. So, I'm quite nervous about meeting another Neuro...
My luck with them is not so good... thanks
andie
I felt like they wanted me out of their office NOW... They had no concern over how I was feeling (pain)..or my off balance with walking.
after three years..I have a Rhuem who thinks I need to see another Neurol...but he is not going to leave me stranded...he said he will help figure this out. So, I'm quite nervous about meeting another Neuro...
My luck with them is not so good... thanks
andie
I had one neuro who did my NCV/EMG (I was having severe hip and leg pain that they thought was due to a disc problem but it didn't all add up) - this guy was horrible. Condescending, short. He was totally dismissive until he did my neuro exam. Then he ordered a new MRI of my brain. He must have done the Hoffman's test on me 15 times (that's where they flick your finger tip and your thumb moves when it shouldn't). The radiologist said my findings were consistent with demyelination and MS (this was my second MRI). The neuro said he thought it was ADEM and I should be seen once a year unless I lost my vision. At least he did an exam but he was a total jerk and I thought was being irresponsible by not fully examining me with a cervical mri and LP.
I only have one lesion on my brain (on a 1.5 T) and none found on my spine. But I have a very abnormal neuro exam. I pursued a MS specialist and he ordered the rest of the tests and diagnosed me even though my LP was negative. He's not the most warm and fuzzy doctor, but he answers questions, addresses symptoms and is appropriate.
The worst so far was the neurosurgeon I saw. He looked at my MRI and told me to go have some epidurals and come back when I had weakness and they would do the surgery. No examination whatsoever. My primary showed me the report he sent and he claimed to do a complete neuro exam. On his exam, I was normal. We laughed - I haven't had a normal neuro exam ever. He is supposed to be the best neurosurgeon in Rhode Island. It really bothers me that he would claim to do an exam he never did. And it might have saved me from having useless epidurals since my leg symptoms are not due to the disc problem. I was in such pain, I would have done anything to have it relieved, even the surgery.
Now I do this thing with docs - When they've given me their opinion and plan, I say, "So what you're saying is that you think this symptoms is due to this ______ and your plan of addressing this problem is _____ based on your examination findings of _____ and the tests to date? It's totally annoying to them but it quickly points out the flaws in logic or the lack of examination. I struggle to stand up for myself sometimes, and this way I feel I am being polite but forcing them to clarify.
Have you guys read the book How Doctors Think? It's very interesting.
I only have one lesion on my brain (on a 1.5 T) and none found on my spine. But I have a very abnormal neuro exam. I pursued a MS specialist and he ordered the rest of the tests and diagnosed me even though my LP was negative. He's not the most warm and fuzzy doctor, but he answers questions, addresses symptoms and is appropriate.
The worst so far was the neurosurgeon I saw. He looked at my MRI and told me to go have some epidurals and come back when I had weakness and they would do the surgery. No examination whatsoever. My primary showed me the report he sent and he claimed to do a complete neuro exam. On his exam, I was normal. We laughed - I haven't had a normal neuro exam ever. He is supposed to be the best neurosurgeon in Rhode Island. It really bothers me that he would claim to do an exam he never did. And it might have saved me from having useless epidurals since my leg symptoms are not due to the disc problem. I was in such pain, I would have done anything to have it relieved, even the surgery.
Now I do this thing with docs - When they've given me their opinion and plan, I say, "So what you're saying is that you think this symptoms is due to this ______ and your plan of addressing this problem is _____ based on your examination findings of _____ and the tests to date? It's totally annoying to them but it quickly points out the flaws in logic or the lack of examination. I struggle to stand up for myself sometimes, and this way I feel I am being polite but forcing them to clarify.
Have you guys read the book How Doctors Think? It's very interesting.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
