Please help me advocate for myself medically.
August 18, 2011 3:20 PM Subscribe
Please help me bolster my courage and come up with a plan. I am losing hope after being told once again that it's "all in my head" and to go to a psychiatrist.
I am currently at the Mayo Clinic in Rochester, MN, for a 1 to 2 week evaluation, where a neurologist has said that my problems are caused purely by stress and has sent me to psychiatry.
I have already had a full psychiatric evaluation in my hometown, one month ago. I had this because a previous neurologist diagnosed me with Conversion Disorder, and told me that it was caused by repressed childhood trauma. After a full evaluation, the psychiatrist told me that I was mentally healthy and that she was appalled that the neurologist had given me that diagnosis.
It's funny that this is happening, because forty years ago my grandmother went through the same sort of hell at the same Mayo Clinic. She suffered from terrible, completely disabling headaches that no one could understand or alleviate. She went to the Mayo for help, and the doctors told her it was caused by stress only. My grandfather was furious, and as my grandmother puts it, "He went up there and blew the roof off." She was then evaluated further, diagnosed with vascular headaches, and given a cocktail of drugs that completely stopped the debilitating headaches.
She says I need an advocate to do the same for me. I have a wonderful, loving, worried boyfriend who is capable of being assertive for me, but he doesn't know how to start or what is best to say. Metafilter, can you help me sort through this, and come up with a plan of action to get me a more thorough evaluation?
Let me tell you my story.
***
For the last year and a half, I have experienced progressively worsening neurological symptoms. It all started with fainting and visual disturbances. I began to see afterimages, I'd get the motion aftereffect after mere minutes of walking, and I began to realize that my peripheral vision was no longer trustworthy. Out of the corner of my eye, I'd glimpse illusory motion and distortion of objects. I also began to have trouble with fainting, and with my vision blacking out when I stood up. Once, after fainting, I hallucinated a neon, stationary, snowflake-like fractal pattern across my entire visual field. It was translucent and I could see normally past it.
Then I started to become chronically exhausted. I'd sleep fourteen hours a night and never feel rested. And I started to experience strange, involuntary head drops. Occasionally I'd involuntarily collapse to the floor.
Then I had a sleep study done, and it was discovered that I experienced myoclonic jerks during REM sleep. This was originally diagnosed to me as generalized myoclonic epilepsy, but later the same doctor changed his mind and decided that the myoclonus was not epileptic in origin.
Later I began to experience episodes of eyelid fluttering and blinking. At first they were just blinking, but eventually I began to shake a little bit during the more severe episodes. These episodes specifically were caught on video EEG and found to be non-epileptic.
Later I began to experience myoclonic jerks as I was falling asleep. A month or so later, I began to experience these same jerks in the evenings as I was getting tired. Now I get them during the day, too, especially when I'm very tired. The myoclonic jerks can be very bad, and sometimes they sort of cascade, and come rhythmically all in a row, very violently and affecting most of my body. All my muscles will tighten up, and when they are very bad, I have trouble breathing until the episode is over. With the worst ones, my breath is forced out of me with a sort of grunting, choking sound. I am unable to respond to questions or follow orders during these episodes, but I remain conscious.
These myoclonic episodes are often triggered by surprise, loud noises, black and white patterns, and flashing lights, though others seem to spontaneously occur when I am relaxed.
***
My appointment here at the Mayo Clinic began on Tuesday morning. I initially met with an epileptologist, who sent me for an MRI and then EEG evaluation, telling me he'd decide on further tests and consults after that.
After the in-patient video EEG caught a few bad myoclonic jerking episodes, the attending neurologist (not my original neurologist) came to my room and told me that the episodes were not epileptic in origin, and that therefore they were caused by stress. Then he set up an appointment with a psychiatrist (it's not until next Friday, the day before my flight leaves to go back home), offered me a tilt-table test to definitively diagnose me with fainting, and told me that no further evaluation would be necessary.
Then I was told that my original neurologist was going on vacation Monday and would not be able to see me again before he left.
Metafilter, my life has been slowly crumbling as my symptoms have increased over the last year and a half. I need help, and I need you to help me get it. What can my boyfriend and I do?
I am currently at the Mayo Clinic in Rochester, MN, for a 1 to 2 week evaluation, where a neurologist has said that my problems are caused purely by stress and has sent me to psychiatry.
I have already had a full psychiatric evaluation in my hometown, one month ago. I had this because a previous neurologist diagnosed me with Conversion Disorder, and told me that it was caused by repressed childhood trauma. After a full evaluation, the psychiatrist told me that I was mentally healthy and that she was appalled that the neurologist had given me that diagnosis.
It's funny that this is happening, because forty years ago my grandmother went through the same sort of hell at the same Mayo Clinic. She suffered from terrible, completely disabling headaches that no one could understand or alleviate. She went to the Mayo for help, and the doctors told her it was caused by stress only. My grandfather was furious, and as my grandmother puts it, "He went up there and blew the roof off." She was then evaluated further, diagnosed with vascular headaches, and given a cocktail of drugs that completely stopped the debilitating headaches.
She says I need an advocate to do the same for me. I have a wonderful, loving, worried boyfriend who is capable of being assertive for me, but he doesn't know how to start or what is best to say. Metafilter, can you help me sort through this, and come up with a plan of action to get me a more thorough evaluation?
Let me tell you my story.
***
For the last year and a half, I have experienced progressively worsening neurological symptoms. It all started with fainting and visual disturbances. I began to see afterimages, I'd get the motion aftereffect after mere minutes of walking, and I began to realize that my peripheral vision was no longer trustworthy. Out of the corner of my eye, I'd glimpse illusory motion and distortion of objects. I also began to have trouble with fainting, and with my vision blacking out when I stood up. Once, after fainting, I hallucinated a neon, stationary, snowflake-like fractal pattern across my entire visual field. It was translucent and I could see normally past it.
Then I started to become chronically exhausted. I'd sleep fourteen hours a night and never feel rested. And I started to experience strange, involuntary head drops. Occasionally I'd involuntarily collapse to the floor.
Then I had a sleep study done, and it was discovered that I experienced myoclonic jerks during REM sleep. This was originally diagnosed to me as generalized myoclonic epilepsy, but later the same doctor changed his mind and decided that the myoclonus was not epileptic in origin.
Later I began to experience episodes of eyelid fluttering and blinking. At first they were just blinking, but eventually I began to shake a little bit during the more severe episodes. These episodes specifically were caught on video EEG and found to be non-epileptic.
Later I began to experience myoclonic jerks as I was falling asleep. A month or so later, I began to experience these same jerks in the evenings as I was getting tired. Now I get them during the day, too, especially when I'm very tired. The myoclonic jerks can be very bad, and sometimes they sort of cascade, and come rhythmically all in a row, very violently and affecting most of my body. All my muscles will tighten up, and when they are very bad, I have trouble breathing until the episode is over. With the worst ones, my breath is forced out of me with a sort of grunting, choking sound. I am unable to respond to questions or follow orders during these episodes, but I remain conscious.
These myoclonic episodes are often triggered by surprise, loud noises, black and white patterns, and flashing lights, though others seem to spontaneously occur when I am relaxed.
***
My appointment here at the Mayo Clinic began on Tuesday morning. I initially met with an epileptologist, who sent me for an MRI and then EEG evaluation, telling me he'd decide on further tests and consults after that.
After the in-patient video EEG caught a few bad myoclonic jerking episodes, the attending neurologist (not my original neurologist) came to my room and told me that the episodes were not epileptic in origin, and that therefore they were caused by stress. Then he set up an appointment with a psychiatrist (it's not until next Friday, the day before my flight leaves to go back home), offered me a tilt-table test to definitively diagnose me with fainting, and told me that no further evaluation would be necessary.
Then I was told that my original neurologist was going on vacation Monday and would not be able to see me again before he left.
Metafilter, my life has been slowly crumbling as my symptoms have increased over the last year and a half. I need help, and I need you to help me get it. What can my boyfriend and I do?
I have no experience with your symptoms. I did however go through a period of mysterious ailments of my own for which I was finding no answers. Maybe sharing some of my thought process will help you.
Firstly, please do not "blow the roof off" anywhere. Do you believe your doctor is not giving your case the attention it deserves and won't until you stage a confrontation? If you believe that, you don't trust your doctor. That's completely fine and you should listen to that feeling. But the way to handle a situation like that is to get a second opinion. From a different doctor.
Now, looking ahead to the future, there are a few possibilities. This next doctor might give you an answer that you trust. If so, you're golden. If not, you should consult another doctor. Once again, this doctor might give you an answer you trust. If not, you can continue finding new doctors indefinitely, but at a certain point, you should be willing to examine why you do not trust the opinion of multiple medical professionals.
I have no idea what the cause of your symptoms are. But I think the path forward is this: second opinion, then maybe third opinion. If nothing has changed, re-examine your assumptions and why you feel so strongly that the answers you receive need to conform to them.
posted by the jam at 4:10 PM on August 18, 2011
Firstly, please do not "blow the roof off" anywhere. Do you believe your doctor is not giving your case the attention it deserves and won't until you stage a confrontation? If you believe that, you don't trust your doctor. That's completely fine and you should listen to that feeling. But the way to handle a situation like that is to get a second opinion. From a different doctor.
Now, looking ahead to the future, there are a few possibilities. This next doctor might give you an answer that you trust. If so, you're golden. If not, you should consult another doctor. Once again, this doctor might give you an answer you trust. If not, you can continue finding new doctors indefinitely, but at a certain point, you should be willing to examine why you do not trust the opinion of multiple medical professionals.
I have no idea what the cause of your symptoms are. But I think the path forward is this: second opinion, then maybe third opinion. If nothing has changed, re-examine your assumptions and why you feel so strongly that the answers you receive need to conform to them.
posted by the jam at 4:10 PM on August 18, 2011
Response by poster: Oh, and I have no problem with the non-epilepsy diagnosis. I just want to know what else this could be.
The jam, you are right about not being confrontational.
posted by sunnichka at 4:12 PM on August 18, 2011
The jam, you are right about not being confrontational.
posted by sunnichka at 4:12 PM on August 18, 2011
Wow. First of all, I am really sorry you're going through all of that. Having a mystery diagnosis IS incredibly stressful, but suggesting it's all down to stress or it's "in your head" is not only entirely unhelpful, but will make you even more stressed. I have been there, and it's an awful place.
Ask them for a second opinion with another neurologist. You need to see someone else who will not just hear hoofbeats and think "Horse!" - this is a zebra. Until someone takes you seriously, keep getting another opinion. YOU are the expert on your body. If you say it isn't stress, IT IS NOT STRESS! I freaking hate that BS. A lot of times, it's the lazy doctor's cop-out.
Have they tested you for a Chiari Malformation? It can cause a lot of those symptoms and is surgically treatable. It's also rare enough that a lot of specialists don't catch it. Here's one woman's account of having CM.
You explained yourself well here. Just keep at it. Memail me if you want to talk.
posted by guster4lovers at 4:17 PM on August 18, 2011 [1 favorite]
Ask them for a second opinion with another neurologist. You need to see someone else who will not just hear hoofbeats and think "Horse!" - this is a zebra. Until someone takes you seriously, keep getting another opinion. YOU are the expert on your body. If you say it isn't stress, IT IS NOT STRESS! I freaking hate that BS. A lot of times, it's the lazy doctor's cop-out.
Have they tested you for a Chiari Malformation? It can cause a lot of those symptoms and is surgically treatable. It's also rare enough that a lot of specialists don't catch it. Here's one woman's account of having CM.
You explained yourself well here. Just keep at it. Memail me if you want to talk.
posted by guster4lovers at 4:17 PM on August 18, 2011 [1 favorite]
I am not remotely a medical professional, so take everything I say with a solid grain of salt. A few years ago, I experienced some of your symptoms, particularly the visual things, the black-white triggers, the fainting and "lucid fainting", as I called it, and some momentary hallucinations, as it were. I had had them for a couple of years, and had been variously shrugged off by doctors, told that "some people are fainters", or I was sent to have myself checked out psychologically. I finally got to a GP who diagnosed migraines (more in desperation than because of any clear understanding of what was going on) and was prescribed some migraine medication, which ended up working.
Now, I am not suggesting you have migraine (though it is not a bad idea to talk this through with a doctor - I discounted it because I frequently felt more nauseous/other symptoms were more prominent than headaches), but I would say:
1. be prepared to go to many, many doctors, try and test many explanations. Don't be discouraged by doctors fobbing you off. It has been my experience (personal, and through family/friends/acquaintances) that doctors get scare or dismissive of unusual (for them) stuff. Very often, the "psychological" route is a confession of impotence on the side of the doctor, and an attempt to cloud their own lack of knowledge.
2. be prepared for some truth in the whole "stress" idea. About a year after my "migraine" diagnosis, and after they were under control, pretty much, I was also diagnosed with depression. My doctor at the time, who was a wonderful Irishman, told me that once you have eliminated EVERY organic alternative, and only then, do you see if looking at your soul, as it were, is what is called for. Apparently, the migrains were my body's way of saying"Ho!". I know people who have developed stress-related IBS, debilitating stomache aches, and even sores on their bodies. At the same time, I know people who have been misdiagnosed as stress-balls, and had other, organic problems (which might have been aggravated by stress, but still).
I don't have anything further to add, just want to wish you all the best. It sounds like what you have done so far eliminates the more immediate scary alternatives.
posted by miorita at 4:24 PM on August 18, 2011 [1 favorite]
Now, I am not suggesting you have migraine (though it is not a bad idea to talk this through with a doctor - I discounted it because I frequently felt more nauseous/other symptoms were more prominent than headaches), but I would say:
1. be prepared to go to many, many doctors, try and test many explanations. Don't be discouraged by doctors fobbing you off. It has been my experience (personal, and through family/friends/acquaintances) that doctors get scare or dismissive of unusual (for them) stuff. Very often, the "psychological" route is a confession of impotence on the side of the doctor, and an attempt to cloud their own lack of knowledge.
2. be prepared for some truth in the whole "stress" idea. About a year after my "migraine" diagnosis, and after they were under control, pretty much, I was also diagnosed with depression. My doctor at the time, who was a wonderful Irishman, told me that once you have eliminated EVERY organic alternative, and only then, do you see if looking at your soul, as it were, is what is called for. Apparently, the migrains were my body's way of saying"Ho!". I know people who have developed stress-related IBS, debilitating stomache aches, and even sores on their bodies. At the same time, I know people who have been misdiagnosed as stress-balls, and had other, organic problems (which might have been aggravated by stress, but still).
I don't have anything further to add, just want to wish you all the best. It sounds like what you have done so far eliminates the more immediate scary alternatives.
posted by miorita at 4:24 PM on August 18, 2011 [1 favorite]
I think you are a good candidate for a diagnosis of Anti-NMDA encephalitis:
Anti-NMDA (N-methyl D-aspartate) receptor encephalitis is an acute form of encephalitis, potentially lethal but with high probability for recovery, caused by autoimmune reaction against NR1- and NR2-subunits of the glutamate NMDA receptor.[1] Different descriptions and syndromal designations for this disease existed in the medical literature prior to 2007, when the cause was established and it received its current name.[2] The disease is associated with tumours, mostly teratomas of the ovaries, and thus is considered a paraneoplastic syndrome. Howerever, there are a substantial number of cases with no detectable cancerous tissue.
According to a review of 100 cases in The Lancet,[3] 91 of the 100 patients were women, mean age of all patients numbered 23 years (5-76 range); of the 98 patients that underwent an oncological screening 58 had a tumour, predominantly an ovarian teratoma. All patients presented with psychiatric symptoms or memory problems; 76 of them suffered from seizures, 88 developed unresponsiveness (decreased consciousness), 86 - dyskinesias, 69 - autonomic instability, and 66 - hypoventilation. Tumour treatment associated with better prognosis; 75 patients got well without residual problems and 25 died or were left with severe deficits [My emphases]
Seizures--as you describe in the present question.
Unresponsiveness-- from this previous question:
This was followed by my entire body slumping slowly to the ground. I remained motionless in this position for a minute or two, fully conscious, trying desperately to move, but I felt entirely paralyzed. I couldn't even blink.
My boyfriend noticed this and said, "Sunnichka? Sunnichka? Are you okay?"
The strange thing is that I was able to just barely mumble to him, "Im-ok" and then "hang-on." But more than that, I was absolutely incapable of.
Hypoventilation-- also from the present question:
All my muscles will tighten up, and when they are very bad, I have trouble breathing until the episode is over.
Dyskinesia-- also from the present question:
Later I began to experience episodes of eyelid fluttering and blinking. At first they were just blinking, but eventually I began to shake a little bit during the more severe episodes. These episodes specifically were caught on video EEG and found to be non-epileptic.
And finally, the link to a potential ovarian problem:
I know you aren't my doctor, but I'm just frustrated and hoping for some ideas while I wait for a follow-up appointment. For the last two months, I've developed a tender mass on the left side of my abdomen, right underneath the ribs. I noticed it during my last period, it stopped hurting after a few days, and now it's come back again with my next period.
This could well have been your immune system attacking something on or near an ovary.
Also, a tilt-table test is designed to detect a form of autonomic instability.
Ask to see a doctor at the clinic who has an interest in anti-NMDA encephalitis; they must have one, it's kind of a hot new thing right now.
posted by jamjam at 4:32 PM on August 18, 2011 [1 favorite]
Anti-NMDA (N-methyl D-aspartate) receptor encephalitis is an acute form of encephalitis, potentially lethal but with high probability for recovery, caused by autoimmune reaction against NR1- and NR2-subunits of the glutamate NMDA receptor.[1] Different descriptions and syndromal designations for this disease existed in the medical literature prior to 2007, when the cause was established and it received its current name.[2] The disease is associated with tumours, mostly teratomas of the ovaries, and thus is considered a paraneoplastic syndrome. Howerever, there are a substantial number of cases with no detectable cancerous tissue.
According to a review of 100 cases in The Lancet,[3] 91 of the 100 patients were women, mean age of all patients numbered 23 years (5-76 range); of the 98 patients that underwent an oncological screening 58 had a tumour, predominantly an ovarian teratoma. All patients presented with psychiatric symptoms or memory problems; 76 of them suffered from seizures, 88 developed unresponsiveness (decreased consciousness), 86 - dyskinesias, 69 - autonomic instability, and 66 - hypoventilation. Tumour treatment associated with better prognosis; 75 patients got well without residual problems and 25 died or were left with severe deficits [My emphases]
Seizures--as you describe in the present question.
Unresponsiveness-- from this previous question:
This was followed by my entire body slumping slowly to the ground. I remained motionless in this position for a minute or two, fully conscious, trying desperately to move, but I felt entirely paralyzed. I couldn't even blink.
My boyfriend noticed this and said, "Sunnichka? Sunnichka? Are you okay?"
The strange thing is that I was able to just barely mumble to him, "Im-ok" and then "hang-on." But more than that, I was absolutely incapable of.
Hypoventilation-- also from the present question:
All my muscles will tighten up, and when they are very bad, I have trouble breathing until the episode is over.
Dyskinesia-- also from the present question:
Later I began to experience episodes of eyelid fluttering and blinking. At first they were just blinking, but eventually I began to shake a little bit during the more severe episodes. These episodes specifically were caught on video EEG and found to be non-epileptic.
And finally, the link to a potential ovarian problem:
I know you aren't my doctor, but I'm just frustrated and hoping for some ideas while I wait for a follow-up appointment. For the last two months, I've developed a tender mass on the left side of my abdomen, right underneath the ribs. I noticed it during my last period, it stopped hurting after a few days, and now it's come back again with my next period.
This could well have been your immune system attacking something on or near an ovary.
Also, a tilt-table test is designed to detect a form of autonomic instability.
Ask to see a doctor at the clinic who has an interest in anti-NMDA encephalitis; they must have one, it's kind of a hot new thing right now.
posted by jamjam at 4:32 PM on August 18, 2011 [1 favorite]
Definitely discuss migraine with your doctor- they can have some super weird symptoms with or without headache. Maybe you could convince someone to give you a trial of a migraine drug and see if it helps you. They ARE probably looking for 'zebras' at the Mayo (it's what they do, after all) but migraines are really common and treatable.
posted by genmonster at 4:37 PM on August 18, 2011
posted by genmonster at 4:37 PM on August 18, 2011
Please remember that just because an ailment is stress-based doesn't make it not serious. Stress is easy to underestimate because everyone experiences it. But just like people with compromised immune systems are at real risk from a common cold, those who for whatever reason don't have the standard human toolkit for coping with stress can be in real danger from stress-related illnesses.
Mayo clinic is one of the best medical facilities in the world. The level of skill there in differential diagnosis is stellar. They also have your best interest in mind. If they are referring you to a psychiatrist, it is because the origin of your disease lives in the part of the body that specialist is best suited to treat. Psychiatrists are fully qualified MDs who are better experienced and more qualified than any other kind of medical doctor for certain ailments. If you are being told by an expert that your ailment is one that requires the expertise of a psychiatrist, I believe you owe it to yourself and your health to trust their diagnosis.
posted by kitarra at 5:08 PM on August 18, 2011 [2 favorites]
Mayo clinic is one of the best medical facilities in the world. The level of skill there in differential diagnosis is stellar. They also have your best interest in mind. If they are referring you to a psychiatrist, it is because the origin of your disease lives in the part of the body that specialist is best suited to treat. Psychiatrists are fully qualified MDs who are better experienced and more qualified than any other kind of medical doctor for certain ailments. If you are being told by an expert that your ailment is one that requires the expertise of a psychiatrist, I believe you owe it to yourself and your health to trust their diagnosis.
posted by kitarra at 5:08 PM on August 18, 2011 [2 favorites]
I totally disagree with the jam's "go away quietly and get another doctor" advice. You might need to get another doctor, but in the meantime you flew to the Mayo Clinic, they are blowing you off, and that's not cool. (I agree with miorita when she says that "psychological" = "I don't know what's wrong with you and I wish you'd go away" in doctorspeak.)
If I were your advocate, I would find an appropriate doctor/nurse/receptionist and start a Polite Yet Firm Barrage of Questions, viz:
I am very unhappy with my girlfriend's treatment. I don't understand the diagnosis. What does the diagnosis mean? Can you show me scientific papers about how stress leads to myoclonic seizures and neurological disturbances? Are epilepsy and stress the only two reasons anyone ever has these symptoms? If not, how does the doctor know that stress is the culprit in my girlfriend's case? Are there examples of people who've had myoclonic seizures and been cured by stress-reduction techniques? Does the Mayo Clinic have stress-reducing resources it can prescribe to her? Who else can see my girlfriend -- she was under the impression she'd get a second consult with a neurologist and he unexpectedly went on vacation. We are very, very unhappy and despreate and have flown from East Bejeezus and spent all this money and time, and we appreciate that the medical staff here is working hard and have hard jobs, and we also just don't really understand or jibe with this diagnosis or understand how you've come to it. What do you suggest that we do? Can you do something for me? How can you help me? If you can't help me, who else should I talk to? (Those last four questions work wonders in all sorts of customer service situations.)
Generally I would ask a thousand questions until I understood things more and/or they took your case seriously. Your advocate's key words are polite and relentless.
posted by hungrytiger at 5:13 PM on August 18, 2011 [13 favorites]
If I were your advocate, I would find an appropriate doctor/nurse/receptionist and start a Polite Yet Firm Barrage of Questions, viz:
I am very unhappy with my girlfriend's treatment. I don't understand the diagnosis. What does the diagnosis mean? Can you show me scientific papers about how stress leads to myoclonic seizures and neurological disturbances? Are epilepsy and stress the only two reasons anyone ever has these symptoms? If not, how does the doctor know that stress is the culprit in my girlfriend's case? Are there examples of people who've had myoclonic seizures and been cured by stress-reduction techniques? Does the Mayo Clinic have stress-reducing resources it can prescribe to her? Who else can see my girlfriend -- she was under the impression she'd get a second consult with a neurologist and he unexpectedly went on vacation. We are very, very unhappy and despreate and have flown from East Bejeezus and spent all this money and time, and we appreciate that the medical staff here is working hard and have hard jobs, and we also just don't really understand or jibe with this diagnosis or understand how you've come to it. What do you suggest that we do? Can you do something for me? How can you help me? If you can't help me, who else should I talk to? (Those last four questions work wonders in all sorts of customer service situations.)
Generally I would ask a thousand questions until I understood things more and/or they took your case seriously. Your advocate's key words are polite and relentless.
posted by hungrytiger at 5:13 PM on August 18, 2011 [13 favorites]
p.s. Not on preview, kitarra is right that a lot of things are caused by stress, and that doesn't make them "unserious" or "imaginary" illnesses. You may well have a stress-induced illness. But you deserve to have your situation well-explained to you, and "it's not epilepsy so therefore it's stress, oh yeah and your neurologist skipped town so you won't need another consult" is neither illuminating nor good bedside manner.
posted by hungrytiger at 5:17 PM on August 18, 2011 [1 favorite]
posted by hungrytiger at 5:17 PM on August 18, 2011 [1 favorite]
[hungrytiger] ...you flew to the Mayo Clinic, they are blowing you off, and that's not cool...
From what I'm reading, the clinic hasn't blown her off.
[OP] ...neurologist has said that my problems are caused purely by stress and has sent me to psychiatry...
It sounds as if she's been referred to the psychiatry department.
[hungrytiger] ...I agree with miorita when she says that "psychological" = "I don't know what's wrong with you and I wish you'd go away"...
That may be true sometimes, but I don't think that's fair as a blanket statement. Especially when you're talking about the blurry overlap between neurology and psychiatry. I would wager that both specialties send a huge number of referrals each other's way.
[OP:] I have already had a full psychiatric evaluation in my hometown, one month ago. I had this because a previous neurologist diagnosed me with Conversion Disorder, and told me that it was caused by repressed childhood trauma. After a full evaluation, the psychiatrist told me that I was mentally healthy and that she was appalled that the neurologist had given me that diagnosis.
That's two (or three, depending on how you count) neurologists weighing in that it's not a neurological condition. One psychiatrist weighing in that it's not conversion disorder. That's why I think the OP should continue find opinions until she is satisfied... including seeing what the psychiatrists at the Mayo Clinic think, since she's already there.
posted by the jam at 7:07 PM on August 18, 2011 [1 favorite]
From what I'm reading, the clinic hasn't blown her off.
[OP] ...neurologist has said that my problems are caused purely by stress and has sent me to psychiatry...
It sounds as if she's been referred to the psychiatry department.
[hungrytiger] ...I agree with miorita when she says that "psychological" = "I don't know what's wrong with you and I wish you'd go away"...
That may be true sometimes, but I don't think that's fair as a blanket statement. Especially when you're talking about the blurry overlap between neurology and psychiatry. I would wager that both specialties send a huge number of referrals each other's way.
[OP:] I have already had a full psychiatric evaluation in my hometown, one month ago. I had this because a previous neurologist diagnosed me with Conversion Disorder, and told me that it was caused by repressed childhood trauma. After a full evaluation, the psychiatrist told me that I was mentally healthy and that she was appalled that the neurologist had given me that diagnosis.
That's two (or three, depending on how you count) neurologists weighing in that it's not a neurological condition. One psychiatrist weighing in that it's not conversion disorder. That's why I think the OP should continue find opinions until she is satisfied... including seeing what the psychiatrists at the Mayo Clinic think, since she's already there.
posted by the jam at 7:07 PM on August 18, 2011 [1 favorite]
Also, I'd like to agree with Kitarra that stress is no joke. People hear the word "stress" and think "oh, everyone experiences stress, you must be weak if you can't hack it." Everyone gets thirsty, but you can die of dehydration. Everyone has lost a little blood here and there, but you can easily bleed to death. Everyone's been tired, but severe sleep deprivation can cause you to see polka dotted rhinoceroses charging at you from every direction. As with many things, stress is a matter of degrees. And at the high end, it's as serious as any other condition and shouldn't be ignored.
posted by the jam at 7:17 PM on August 18, 2011 [2 favorites]
posted by the jam at 7:17 PM on August 18, 2011 [2 favorites]
Response by poster: I have a movement disorders specialist neurologist I see regularly at home, who tells me that not only does he not think I have conversion disorder, but also he does not believe in conversion disorder. He suspects I have an "ion channelopathy" but isn't sure about it and hasn't found medications to help me, thus the Mayo trip. So there's one neurologist who weighs in that it's neurological.
posted by sunnichka at 7:17 PM on August 18, 2011
posted by sunnichka at 7:17 PM on August 18, 2011
Response by poster: And I definitely plan on cooperating fully with the psychiatrist.
posted by sunnichka at 7:19 PM on August 18, 2011
posted by sunnichka at 7:19 PM on August 18, 2011
It makes sense to badger the Mayo staff for the explanation now; she's made a trip to Mayo, which can't be cheap or easy, and if they have a well-reasoned explanation for her condition, now would be the time to hear it.
Part of doctoring is diagnosing; another part of doctoring is making your diagnosis understood.
As for the "psychological explanation = I don't know what's wrong with you" thing, I agree that it's not fair as a blanket statement; I should have qualified it. I also wasn't trying to say that the OP didn't have a stress condition. Just that, OP, you deserve to understand the reasoning behind your diagnosis. Please feel free to be ask questions until you do understand.
posted by hungrytiger at 8:25 PM on August 18, 2011
Part of doctoring is diagnosing; another part of doctoring is making your diagnosis understood.
As for the "psychological explanation = I don't know what's wrong with you" thing, I agree that it's not fair as a blanket statement; I should have qualified it. I also wasn't trying to say that the OP didn't have a stress condition. Just that, OP, you deserve to understand the reasoning behind your diagnosis. Please feel free to be ask questions until you do understand.
posted by hungrytiger at 8:25 PM on August 18, 2011
Okay, at Mayo Jax they had a system where the first doctor you see is the doctor who arranges everything during your visit. You see them for your first consult, they order tests and send you to consult with other depts. After that they see you again to go over all of the results of the tests and the additional consults. They called it "primary investigator" or something like that.
If yours is now on vacation, someone else should be seeing you instead. Find out what their procedure is, what they have already arranged, if they haven't why not. SOMEone should be following up with you before you go home, even if it's not the original doc, and if not you definitely have a right to complain to the head of the dept or even the hospital.
posted by galadriel at 9:53 PM on August 18, 2011
If yours is now on vacation, someone else should be seeing you instead. Find out what their procedure is, what they have already arranged, if they haven't why not. SOMEone should be following up with you before you go home, even if it's not the original doc, and if not you definitely have a right to complain to the head of the dept or even the hospital.
posted by galadriel at 9:53 PM on August 18, 2011
IANYD, and I really don't feel like I have anything useful to add regarding what your symptoms could be since your situation's pretty complicated, but I can tell you that non-epileptic seizures are not uncommon, at least in the emergency department patient population. Psychiatry helps many people with this problem. I can't tell you whether this is your problem, but I don't see any clear evidence that this isn't your problem either.
I don't think it's likely you have anti-NMDA receptor encephalitis - to be honest, I've never heard of this obscure diagnosis before, but just based on the facts laid out here, it doesn't look like it fits. When a diagnosis includes seizures, this means epileptic seizures, not non-epileptic seizures, and secondly, in order to have this diagnosis, you have to have symptoms consistent with encephalitis.
To the OP, regarding advocating for yourself, you can see if you can get a second opinion from a non-epileptologist. Your EEG was negative so whatever your condition is, it doesn't look epileptic in origin. Sub-specialists like epileptologists tend to look for what they look for and nothing much else, because they have a quite narrow field of focus. i.e. when you're a hammer, everything looks like a nail. It's not epileptic, he's not interested, because that's his specialty. Another thing you can do is wait today to see if there's a cancellation/no show in your original neurologist's schedule so you can catch him before he goes on vacation. If you can't get in with him, you could try this same tactic with your psychiatry appointment - psychiatrists get a lot of no-shows. Final thing I can think of would be to try to use the wait-for-a-cancellation strategy to get in to see an internal medicine physician. Internists should have a more open mind about what the differential could include and if there are any non-neurology, non-psychiatry paths you should explore. But I agree with others that the psych route deserves exploring, at the least, suffering with a problem like this can have a huge emotional toll.
posted by treehorn+bunny at 12:19 AM on August 19, 2011
I don't think it's likely you have anti-NMDA receptor encephalitis - to be honest, I've never heard of this obscure diagnosis before, but just based on the facts laid out here, it doesn't look like it fits. When a diagnosis includes seizures, this means epileptic seizures, not non-epileptic seizures, and secondly, in order to have this diagnosis, you have to have symptoms consistent with encephalitis.
To the OP, regarding advocating for yourself, you can see if you can get a second opinion from a non-epileptologist. Your EEG was negative so whatever your condition is, it doesn't look epileptic in origin. Sub-specialists like epileptologists tend to look for what they look for and nothing much else, because they have a quite narrow field of focus. i.e. when you're a hammer, everything looks like a nail. It's not epileptic, he's not interested, because that's his specialty. Another thing you can do is wait today to see if there's a cancellation/no show in your original neurologist's schedule so you can catch him before he goes on vacation. If you can't get in with him, you could try this same tactic with your psychiatry appointment - psychiatrists get a lot of no-shows. Final thing I can think of would be to try to use the wait-for-a-cancellation strategy to get in to see an internal medicine physician. Internists should have a more open mind about what the differential could include and if there are any non-neurology, non-psychiatry paths you should explore. But I agree with others that the psych route deserves exploring, at the least, suffering with a problem like this can have a huge emotional toll.
posted by treehorn+bunny at 12:19 AM on August 19, 2011
p.s. I'm not sure where your movement disorder neurologist is coming from suggesting that conversion disorders don't exist, because I'm thoroughly convinced that they are very real, and they're certainly still included in the DSM-IV and the WHO's ICD-10 (definitive diagnostic manuals for psychiatry and for overall medical diagnoses).
posted by treehorn+bunny at 12:28 AM on August 19, 2011
posted by treehorn+bunny at 12:28 AM on August 19, 2011
Response by poster: Okay, the best I've gotten so far is a promise that a nurse in the neurology department will call me sometime today to answer my questions. Thanks for all your help.
posted by sunnichka at 11:12 AM on August 19, 2011
posted by sunnichka at 11:12 AM on August 19, 2011
Response by poster: Everyone, I'm really happy to say that I have another consult with a general neurologist on Thursday. I'm going to stress to him that I have myoclonic jerks while sleeping, which hasn't been examined here at all yet.
posted by sunnichka at 8:06 PM on August 19, 2011 [2 favorites]
posted by sunnichka at 8:06 PM on August 19, 2011 [2 favorites]
It took me YEARS and many doctors to get an accurate diagnosis for what is now known to the Left Temporal Lobe Epilepsy. One of the docs I saw was the top neuro in our state, who insisted I was experiencing "stress seizures", non-epileptic in origin. None of my EEGs were positive for epilepsy. He became uninterested and referred me to a psychiatry. At the time, I didn't care about the origin, I just wanted the seizures to stop.
Oh, boy, was he wrong. Three days in ICU of unending seizure state, status epilepticus, proved how wrong he was. From the Stanford Medicine (Stanford Hospital & Clinics): "About half of people with epilepsy have EEG abnormalities between seizures, but the other half have normal EEGs between seizures (pickup of abnormalities increases with more that one EEG). Therefore, the routine EEG is helpful if it shows something abnormal, but a normal EEG does not rule epilepsy. Rarely will a routine EEG capture a seizure during the 30 - 60 minutes of actual recording.
Your negative EEG is a non-issue. I do not personally know another epileptic who didn't have a string of negative EEGs before a seizure was caught by the test. I was kept in hospital for a 10 Day EEG, and we still didn't catch one. Keep trying. You're issue may not be epilepsy, but don't let dismissive doctors relagate your matter to mental health (only). I spent over 30 years with untreated epilepsy due to believing when I was told I was a hypochondriac.
posted by _paegan_ at 8:35 AM on August 22, 2011
Oh, boy, was he wrong. Three days in ICU of unending seizure state, status epilepticus, proved how wrong he was. From the Stanford Medicine (Stanford Hospital & Clinics): "About half of people with epilepsy have EEG abnormalities between seizures, but the other half have normal EEGs between seizures (pickup of abnormalities increases with more that one EEG). Therefore, the routine EEG is helpful if it shows something abnormal, but a normal EEG does not rule epilepsy. Rarely will a routine EEG capture a seizure during the 30 - 60 minutes of actual recording.
Your negative EEG is a non-issue. I do not personally know another epileptic who didn't have a string of negative EEGs before a seizure was caught by the test. I was kept in hospital for a 10 Day EEG, and we still didn't catch one. Keep trying. You're issue may not be epilepsy, but don't let dismissive doctors relagate your matter to mental health (only). I spent over 30 years with untreated epilepsy due to believing when I was told I was a hypochondriac.
posted by _paegan_ at 8:35 AM on August 22, 2011
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posted by sunnichka at 3:26 PM on August 18, 2011