Aa
Hypo Gamma Chondria
Well, I am all lathered up about people being told their neurologic symptoms are in their heads, caused by anxiety, or caused by hyper-awareness of our bodily sensations. It seems we have a new one almost every day. I consider this attitude by physicians to be one of two things. It is either pure arrogance such that if they don't know the answer then the patient must be weak-minded or it is a chauvinistic attitude toward women. This isn't just a rant about the treatment that women get, because we hear the same complaint from men. In addition to arrogance it is the product of a very mediocre and lazy mind. Afterall, once you blame the patient there is no need to think further.
There is a disturbing part of our medical and social history that views women as emotionally weak and given to "nervous conditions." Even though that attitude was dropped from medical teaching 30 years ago, it still seems to pervail in too much of our culture.
I wish there was some way we could go back and throttle Freud who was the huge push in medicine to consider women weak and "hysterical" - who made the latin for uterus "Hystero" (as in hysterectomy)- equal to a fictional mental illness called "hysteria." Though hysteria had been considered a feminine flaw in previous centuries, it seems that Freud gave it modern and scientific legitimacy. This was officially taught to doctors up until about 35 years ago, maybe later. Originally it was considered a purely female problem as we are the only ones with uteruses, but I see the same attitude coming from those neurologists who are so dismissive of so many of us, women AND men. For people who aren't familiar with this concept I looked up "hysteria" in the Websters Revised Unabridged Dictionary:
Hysteria
Hys*te"ri*a\, n. [NL.: cf. F. hyst['e]rie. See Hysteric.] (Med.) A nervous affection, occurring almost exclusively in women, in which the emotional and reflex excitability is exaggerated, and the will power correspondingly diminished, so that the patient loses control over the emotions, becomes the victim of imaginary sensations, and often falls into paroxism or fits.
Note: The chief symptoms are convulsive, tossing movements of the limbs and head, uncontrollable crying and laughing, and a choking sensation as if a ball were lodged in the throat. The affection presents the most varied symptoms, often simulating those of the gravest diseases, but generally curable by mental treatment alone.
Webster's Revised Unabridged Dictionary, © 1996, 1998 MICRA, Inc.
So, why am I writing this? Just to bring up the topic for comment and to explain to anyone who is not familiar with this very damaging way of (non)thinking. It is the beginning of another discussion about the legitimacy of the diagnosis of "Somatoform Disorder" - that is physical symptoms being caused by psychological factors - usually "stress" or "anxiety" As the veterans of this forum know, I am suspicious that this disorder is anywhere near as common as our experience with physicians might suggest.
I did a thread quite a while back discussing this, but can't find it. Something like "Psychic Groans or the Real Thing?" Anyone remember it?
Rant over. Comments anyone? Any sociologists among us?
Oh, Hypo Gamma Chondria. That is our official greek house here. It is our refuge for anyone who has ever been told it is "all in their head," who has been made to feel crazy, suspects they actually are crazy or is concerned that they will be crazy if all this goes on much longer. It is for the UnDiagnosed, the MisDiagnosed, and the Diagnosed, but **** ed Off. We sponsor the Friday Night Wienie Roasts where we can skewer an stupid, lazy, non-thinking, arrogantm dismissive, or otherwise defective doctors while we make our way through the world.
Quix
There is a disturbing part of our medical and social history that views women as emotionally weak and given to "nervous conditions." Even though that attitude was dropped from medical teaching 30 years ago, it still seems to pervail in too much of our culture.
I wish there was some way we could go back and throttle Freud who was the huge push in medicine to consider women weak and "hysterical" - who made the latin for uterus "Hystero" (as in hysterectomy)- equal to a fictional mental illness called "hysteria." Though hysteria had been considered a feminine flaw in previous centuries, it seems that Freud gave it modern and scientific legitimacy. This was officially taught to doctors up until about 35 years ago, maybe later. Originally it was considered a purely female problem as we are the only ones with uteruses, but I see the same attitude coming from those neurologists who are so dismissive of so many of us, women AND men. For people who aren't familiar with this concept I looked up "hysteria" in the Websters Revised Unabridged Dictionary:
Hysteria
Hys*te"ri*a\, n. [NL.: cf. F. hyst['e]rie. See Hysteric.] (Med.) A nervous affection, occurring almost exclusively in women, in which the emotional and reflex excitability is exaggerated, and the will power correspondingly diminished, so that the patient loses control over the emotions, becomes the victim of imaginary sensations, and often falls into paroxism or fits.
Note: The chief symptoms are convulsive, tossing movements of the limbs and head, uncontrollable crying and laughing, and a choking sensation as if a ball were lodged in the throat. The affection presents the most varied symptoms, often simulating those of the gravest diseases, but generally curable by mental treatment alone.
Webster's Revised Unabridged Dictionary, © 1996, 1998 MICRA, Inc.
So, why am I writing this? Just to bring up the topic for comment and to explain to anyone who is not familiar with this very damaging way of (non)thinking. It is the beginning of another discussion about the legitimacy of the diagnosis of "Somatoform Disorder" - that is physical symptoms being caused by psychological factors - usually "stress" or "anxiety" As the veterans of this forum know, I am suspicious that this disorder is anywhere near as common as our experience with physicians might suggest.
I did a thread quite a while back discussing this, but can't find it. Something like "Psychic Groans or the Real Thing?" Anyone remember it?
Rant over. Comments anyone? Any sociologists among us?
Oh, Hypo Gamma Chondria. That is our official greek house here. It is our refuge for anyone who has ever been told it is "all in their head," who has been made to feel crazy, suspects they actually are crazy or is concerned that they will be crazy if all this goes on much longer. It is for the UnDiagnosed, the MisDiagnosed, and the Diagnosed, but **** ed Off. We sponsor the Friday Night Wienie Roasts where we can skewer an stupid, lazy, non-thinking, arrogantm dismissive, or otherwise defective doctors while we make our way through the world.
Quix
P.S. And I am a person with NO previous history of anxiety, depression, stress, trauma, etc... no mental disorders of any kind, never been in a car accident, never been abused, never abused (or even used) ANY drugs or alcohol, never been in the hospital except for childbirth...not seeking disability or sympathy from my family, don't have young kids... they have no reason to blame my symptoms on anything else, yet they HAD to attribute my reasonable questions and concerns to ANXIETY. They just HAD to. It's like a sacred ritual they have to perform when the MRI and exam don't scream MS (or something else).
Brice, welcome to the MS forum. I'm a bit South of you in Northern Colorado. Most of the group here has MS or neurologic symptoms that might be MS. Many of us have been called crazy, hysterical, anxious, hypochondriacs, etc. by relatives, medical professionals, coworkers, etc
It's an older thread, and Dr. Quix (being one of the sharper of our bunch) would not accuse any undeserving person of being weak-minded. Much of Quix's commentary is said with a wink and a nod. I think most of us reserve the "Weak-minded" comments for some of the neurologist we have had to deal with over time.
In all fairness, both of mine were pretty good.
Bob
It's an older thread, and Dr. Quix (being one of the sharper of our bunch) would not accuse any undeserving person of being weak-minded. Much of Quix's commentary is said with a wink and a nod. I think most of us reserve the "Weak-minded" comments for some of the neurologist we have had to deal with over time.
In all fairness, both of mine were pretty good.
Bob
Uhm, just because somebody has anxiety or is otherwise anxious, it doesnt mean that they are weak minded.....
those good days feel so great! had one today. felt like i was in my 20's it felt so good. like i'm on cloud nine and want to go to some adrenaline things. a false sense of security for me though, due to these great days do not last for very long but heck i'll take what i can get. i ain't that proud.
we used to call the duty station req's, "dream sheets" for obvious reasons. sure, your husband will stand a better chance getting duty at Ft Lewis if you request the 38th parallel or Ft Hood. gotta love it!
Cheers!
we used to call the duty station req's, "dream sheets" for obvious reasons. sure, your husband will stand a better chance getting duty at Ft Lewis if you request the 38th parallel or Ft Hood. gotta love it!
Cheers!
LOL. Hey when we get good days we got to enjoy them right?! I am hoping Uncle Sam will send my hubby to Ft Lewis next. Then again, if that's where we want then maybe I should be asking for Texas. :-}
-Dee
-Dee
thanks for the info! really appreciate it.
hmm, Seattle and Portland, could be mind boggling possibilities. i do have a thing about diving in the ocean and hanging out in the forests. [somehow gotta get my energy/stamina back on track]. and too, it is a bit cooler on avg there versus where i am currently.
we'll keep an eye on the six and we'll all get through this some how ... many thanks
hmm, Seattle and Portland, could be mind boggling possibilities. i do have a thing about diving in the ocean and hanging out in the forests. [somehow gotta get my energy/stamina back on track]. and too, it is a bit cooler on avg there versus where i am currently.
we'll keep an eye on the six and we'll all get through this some how ... many thanks
Thank you for your service as well! I poked around on the VA's website and found they have a lot of information on MS. I was medically discharged in 2004, on their site it says if you're diagnosed within 7 years of discharge then your MS will be service connected, and the minimum rating is 30%. Not sure when you got out but thought I would mention it. :-) The 3 Excellence Centers are in Seattle, Baltimore, and Portland. Here's a link to their page to save you some time.
http://www.va.gov/ms/
-Dee
http://www.va.gov/ms/
-Dee
It seems like many of us needed to vent! I don't have anxiety Ha I am depressed LOL, which was said by a Neuro now retired, and my FP Dr and all other I see laughed also, as I am the last person to get down. Not that I don't I sure have been lately, but my Dr actually informed him that he missed the mark on that one. So he wanted to see me again, I declined.!
Over the years all of us have had such horrible experiences, and I am sorry anyone else would ever have to suffer someone questioning your knowledge of yourself- it is such an intimate thing to me--it my sense about me, my body and emotions, how do you know when you are not me? For me it is my family who is the worst, despite Dr support. I can empathize with the true betrayal you feel when others demean us this way. That is my feeling on the matter. What they say ect doesn't matter as far as medical terms, bottom line is it demeaning to a person.
Their diagnosis to me is "idiopathic" the idiots don't know what is wrong with us, and don't want to admit it. Rarely would want to call someone an idiot but behavior may warrant it.
So I am sorry any of you have endured this, but it isn't your problem it is theirs.
Over the years all of us have had such horrible experiences, and I am sorry anyone else would ever have to suffer someone questioning your knowledge of yourself- it is such an intimate thing to me--it my sense about me, my body and emotions, how do you know when you are not me? For me it is my family who is the worst, despite Dr support. I can empathize with the true betrayal you feel when others demean us this way. That is my feeling on the matter. What they say ect doesn't matter as far as medical terms, bottom line is it demeaning to a person.
Their diagnosis to me is "idiopathic" the idiots don't know what is wrong with us, and don't want to admit it. Rarely would want to call someone an idiot but behavior may warrant it.
So I am sorry any of you have endured this, but it isn't your problem it is theirs.
Hey missy, I'm sorry I didn't answer this sooner. I was trying to find my neurologist's reports, because what yours said sounded so familiar and I wanted to find his exact wording. I do not understand any more than you do why doctors say, yes, you have something wrong, but at the same time we have to bring up this anxiety thing! They HAVE to? WHY do they have to, when you clearly have physical/organic problems??
Please don't get hostile, he says? He's trying to help you, he says? What planet is he living on when he thinks it's HELPFUL to tell such a patient that their symptoms are due to anxiety??
I know exactly how you feel about losing trust in your doctor--the feeling of anger and the feeling of being unable to talk to him anymore about anything. To prove it, here are some excerpts from my journal that I wrote after I came home from that appointment with my neuro where everything turned upside-down and I felt unbelievably shocked and bewildered. Word for word from my journal entry of Sept. 4, 2001:
------------
[I had been telling him some symptoms,] and that’s when he smiled and really made it clear what he thought--he said that’s the thing, you just have to let this stuff go, and asked me what was my “fantasy” about what all this was....Now why would he say those things unless he thought I were either making things up or just having psychosomatic symptoms and having a fantasy about having a disease? ...
What my “fantasy” is right now, Dr. X, is never going back to another doctor. All they want to deal with, all they know how to deal with, is something completely obvious and straightforward. ...
Why is he playing games with me? Or is he just incompetent, saying I have MS one time and now saying “but that turned out not to be the case”? ...
He said that well, after all we were all getting older, in our forties, lots of times you wake up and don’t feel as well as you do on some other days. ... He said I was going to have to let go of all this....He had said at one point, well, we’re into the whole mind-body thing...
[When I got home,] I eventually got so angry that I threw my sweater down very forcefully, wanted to pound on the bed, lay in bed a long time half watching a Jim Henson version of Jack and the Beanstalk but mostly just breaking out in agonized tears every few minutes and I’ve kept doing it all the time...
I am surprised at how angry I got, how emotional I’ve been, how I’ve let this get to me. I feel that my life has really taken a turn--now I am looked at, classified as, one who is not to be taken seriously ... I hate being one of the tortured “limbolanders”, I never thought I would be given this psych label, and joining that group of people ... Now it appears I could be like those stuck for years and years with symptoms and no answers and pooh-poohed or given conflicting answers by six different neurlogists, but I swear I don’t want to go that route.
What is the truth here? Are they right, would any neurologist agree with them? Or if I went to another one and started “fresh” as so many people are advised to do, would I get a different answer, and if I got a diagnosis from someone else, how much would it mean to me when there was no concurrence?
My confidence in him is totally shaken, I am so very deeply disappointed and angry and again completely rudderless and not knowing who to ask for help and how ... This sadness and anger and disappointment and fear and uncertainty have broken something irreparably, shattered my stupid illusions ...
-------------
So, Missy, does that sound familiar? :) You are not alone!
And here's what HE wrote on that same day (besides getting a number of things wrong about my reported symptoms and trying to "give" me low-back pain, as many doctors do, even though I've never had low-back pain--but that's apparently a clue to "psychosomatic," so they want to put that in there, I guess)... my comments in brackets:
Nancy T. returns for one-year follow-up... She has had no new studies but tends to feel that these symptoms are indicative of some underlying severe illness and is very worried about their implications. She focuses on the fact that I discussed multiple sclerosis with her on one occasion.
[Me here: Uh, does bringing up MS at the first appointment--even when you know the patient has previously had a normal neuro exam and a normal MRI (though it was later re-interpreted by the same radiologist as having small nonspecific lesions)--and then talking about MS over and over and over, and then, when the patient mentions the buzzing and pulling when she bends her head down, saying flatly "That's MS"--that's more than "discussing" MS, that is essentially telling the patient she has MS--wouldn't any normal person conclude that's what he meant??]
Overall, her examination is normal...Multiple sclerosis remains in the differential [he didn't tell me that] but the pattern of symptoms is not suggestive of this condition. She does have a history of an abnormal ABR and a sudden hearing loss so I think at some point we might want to do a lumbar puncture as I have discussed in the past. [Later he did schedule me for an LP, but then made it clear I didn't need it, so it never happened.] I simply think that she is overreacting to the symptoms to a large degree but we need to respond to this in some fashion. [In other words, she's overreacting by asking questions after the doctor all but told her she has a chronic, progressive disabling disease that needs early treatment, but we have to do something to pacify her and shut her up.] She has an ever-expanding problem list which is quite problematic from the medical standpoint. [There's a reason they call it MULTIPLE sclerosis!]
I have sent her for a CPK, acetylcholine receptor antibody, sodium, potassium, and calcium. I have requested authorization for an EMG and nerve conduction study of the legs. [He did the blood tests but never did the EMG and nerve conduction study, even though my insurance would have approved it.] Following that, and I do expect these tests to be normal, I think she is a candidate for a lumbar puncture as I think we need to do something to fully rule out demyelinating disease [that is, we need to convince her she doesn't have MS, after I myself put the idea into her head].
[And here comes the kicker:]
I did open up the discussion about psychology and the mind/body interaction with her and why she was interpreting these things as so serious but gained little headway into insight in this area.
---------------
Isn't it funny (ha ha) how so many of us have had the same experiences.
If that expert forum ever opens up again, I'll pay $25 (or whatever) to try to get a neurologist to explain WHY they feel it so necessary to bring up the stress, anxiety, somatizing, conversion-disorder, etc. stuff to a person who clearly has organic physical problems and/or who has not yet had proper investigations and follow-up done. And more important, I want some neurologist to answer this question: Does your profession have the SLIGHTEST idea how harmful this is to people?
The length and emotional force of this thread, and others like it, are testimony to how much psychological and physical harm is being done to patients by this attitude of doctors. They think they're helping, no doubt; but they don't have a CLUE that they're making things ten times worse.
Missy, I don't envy you having to sort out neurological symptoms when you have spinal damage. I just hope you can find a doctor who takes you seriously. You'd think when you are having so much trouble walking that they would go all out to help you. You'd think.
Best wishes to everyone who's been through this and similar stuff.
Nancy
Please don't get hostile, he says? He's trying to help you, he says? What planet is he living on when he thinks it's HELPFUL to tell such a patient that their symptoms are due to anxiety??
I know exactly how you feel about losing trust in your doctor--the feeling of anger and the feeling of being unable to talk to him anymore about anything. To prove it, here are some excerpts from my journal that I wrote after I came home from that appointment with my neuro where everything turned upside-down and I felt unbelievably shocked and bewildered. Word for word from my journal entry of Sept. 4, 2001:
------------
[I had been telling him some symptoms,] and that’s when he smiled and really made it clear what he thought--he said that’s the thing, you just have to let this stuff go, and asked me what was my “fantasy” about what all this was....Now why would he say those things unless he thought I were either making things up or just having psychosomatic symptoms and having a fantasy about having a disease? ...
What my “fantasy” is right now, Dr. X, is never going back to another doctor. All they want to deal with, all they know how to deal with, is something completely obvious and straightforward. ...
Why is he playing games with me? Or is he just incompetent, saying I have MS one time and now saying “but that turned out not to be the case”? ...
He said that well, after all we were all getting older, in our forties, lots of times you wake up and don’t feel as well as you do on some other days. ... He said I was going to have to let go of all this....He had said at one point, well, we’re into the whole mind-body thing...
[When I got home,] I eventually got so angry that I threw my sweater down very forcefully, wanted to pound on the bed, lay in bed a long time half watching a Jim Henson version of Jack and the Beanstalk but mostly just breaking out in agonized tears every few minutes and I’ve kept doing it all the time...
I am surprised at how angry I got, how emotional I’ve been, how I’ve let this get to me. I feel that my life has really taken a turn--now I am looked at, classified as, one who is not to be taken seriously ... I hate being one of the tortured “limbolanders”, I never thought I would be given this psych label, and joining that group of people ... Now it appears I could be like those stuck for years and years with symptoms and no answers and pooh-poohed or given conflicting answers by six different neurlogists, but I swear I don’t want to go that route.
What is the truth here? Are they right, would any neurologist agree with them? Or if I went to another one and started “fresh” as so many people are advised to do, would I get a different answer, and if I got a diagnosis from someone else, how much would it mean to me when there was no concurrence?
My confidence in him is totally shaken, I am so very deeply disappointed and angry and again completely rudderless and not knowing who to ask for help and how ... This sadness and anger and disappointment and fear and uncertainty have broken something irreparably, shattered my stupid illusions ...
-------------
So, Missy, does that sound familiar? :) You are not alone!
And here's what HE wrote on that same day (besides getting a number of things wrong about my reported symptoms and trying to "give" me low-back pain, as many doctors do, even though I've never had low-back pain--but that's apparently a clue to "psychosomatic," so they want to put that in there, I guess)... my comments in brackets:
Nancy T. returns for one-year follow-up... She has had no new studies but tends to feel that these symptoms are indicative of some underlying severe illness and is very worried about their implications. She focuses on the fact that I discussed multiple sclerosis with her on one occasion.
[Me here: Uh, does bringing up MS at the first appointment--even when you know the patient has previously had a normal neuro exam and a normal MRI (though it was later re-interpreted by the same radiologist as having small nonspecific lesions)--and then talking about MS over and over and over, and then, when the patient mentions the buzzing and pulling when she bends her head down, saying flatly "That's MS"--that's more than "discussing" MS, that is essentially telling the patient she has MS--wouldn't any normal person conclude that's what he meant??]
Overall, her examination is normal...Multiple sclerosis remains in the differential [he didn't tell me that] but the pattern of symptoms is not suggestive of this condition. She does have a history of an abnormal ABR and a sudden hearing loss so I think at some point we might want to do a lumbar puncture as I have discussed in the past. [Later he did schedule me for an LP, but then made it clear I didn't need it, so it never happened.] I simply think that she is overreacting to the symptoms to a large degree but we need to respond to this in some fashion. [In other words, she's overreacting by asking questions after the doctor all but told her she has a chronic, progressive disabling disease that needs early treatment, but we have to do something to pacify her and shut her up.] She has an ever-expanding problem list which is quite problematic from the medical standpoint. [There's a reason they call it MULTIPLE sclerosis!]
I have sent her for a CPK, acetylcholine receptor antibody, sodium, potassium, and calcium. I have requested authorization for an EMG and nerve conduction study of the legs. [He did the blood tests but never did the EMG and nerve conduction study, even though my insurance would have approved it.] Following that, and I do expect these tests to be normal, I think she is a candidate for a lumbar puncture as I think we need to do something to fully rule out demyelinating disease [that is, we need to convince her she doesn't have MS, after I myself put the idea into her head].
[And here comes the kicker:]
I did open up the discussion about psychology and the mind/body interaction with her and why she was interpreting these things as so serious but gained little headway into insight in this area.
---------------
Isn't it funny (ha ha) how so many of us have had the same experiences.
If that expert forum ever opens up again, I'll pay $25 (or whatever) to try to get a neurologist to explain WHY they feel it so necessary to bring up the stress, anxiety, somatizing, conversion-disorder, etc. stuff to a person who clearly has organic physical problems and/or who has not yet had proper investigations and follow-up done. And more important, I want some neurologist to answer this question: Does your profession have the SLIGHTEST idea how harmful this is to people?
The length and emotional force of this thread, and others like it, are testimony to how much psychological and physical harm is being done to patients by this attitude of doctors. They think they're helping, no doubt; but they don't have a CLUE that they're making things ten times worse.
Missy, I don't envy you having to sort out neurological symptoms when you have spinal damage. I just hope you can find a doctor who takes you seriously. You'd think when you are having so much trouble walking that they would go all out to help you. You'd think.
Best wishes to everyone who's been through this and similar stuff.
Nancy
In time, you might want to reconsider your choice to allow your PCP to inform your old neuro of your diagnosis. I do not think that action would be vindictive, but rather a great opportunity to educate this pickle-head. It would be a missed opportunity to have this guy pull his head out of the sand. Yes, it is deliciously gratifying to say "I told you so" in a polite letter. Vindictive? Not.
I've done this on the behalf of a family member who was misdiagnosed and treated badly recently. It was clear the doctor had his head in the sand (somewhere else actually) from the onset. Another facility made the correct diagnosis and ruled out complications easily.
It is unfortunate when a patient gets a label slapped on their forehead.
I've done this on the behalf of a family member who was misdiagnosed and treated badly recently. It was clear the doctor had his head in the sand (somewhere else actually) from the onset. Another facility made the correct diagnosis and ruled out complications easily.
It is unfortunate when a patient gets a label slapped on their forehead.
Good to hear you chime in on that. Good to hear like-minded feedback
>>We are just a bunch of complainers and are sucking the healthcare funding dry,therefore they should not do any diagnostics, they should willfully misdiagnose, and when in doubt...lie or blame the patient.
That is exactly how they treat many many vets. one can view notes at hadit.com to see this in real time if one doubts it.
btw, where are the three "MS Centers of Excellence" you speak of?
thanks for you and your husband's service, Happy Memorial Day
>>We are just a bunch of complainers and are sucking the healthcare funding dry,therefore they should not do any diagnostics, they should willfully misdiagnose, and when in doubt...lie or blame the patient.
That is exactly how they treat many many vets. one can view notes at hadit.com to see this in real time if one doubts it.
btw, where are the three "MS Centers of Excellence" you speak of?
thanks for you and your husband's service, Happy Memorial Day
I too am a veteran. I have heard how bad the medical treatment at the VA is. My only personal experience with them was on active duty during leave away from any bases...they were wonderful, AND during my claims appeal process....they were HORRIBLE.
Now I could say this was because it was two different facilities, but I think the more likely explanation is that some of the people there seem to think disability payment and treatment comes from their own pocket, and therefore they benefit from preventing us from being taken care of the way were promised when we signed up,agreeing to risk our lives.
I am fortunate that my hubby is still active duty, and thus I have chosen to use Tricare instead. As slow and horrible as they can be, the civilian docs they send me to have been pretty good (save a few). The military facilities docs they send me too seem to feel about spouses as the VA feels about it's vets! We are just a bunch of complainers and are sucking the healthcare funding dry,therefore they should not do any diagnostics, they should willfully misdiagnose, and when in doubt...lie or blame the patient.
Very, Very sad! In any case, the VA has created some MS Centers of Excellence at three locations. Of course that's providing you ever get your diagnosis and live in one of these three states. People covet federal healthcare programs like Tricare and VA.....to them I would say this:
Because you are paying little or no out of pocket expense, they make sure to let you know that they don't have to treat you well, as you get what you pay for ,or rather what you are not paying for!
How easily they forget what is not payed in money is payed in the promise of our lives for our country should it be needed. Why is that so cheap to them? Sorry guys! I'm getting off my giant soapbox now. :-)
-Dee
Now I could say this was because it was two different facilities, but I think the more likely explanation is that some of the people there seem to think disability payment and treatment comes from their own pocket, and therefore they benefit from preventing us from being taken care of the way were promised when we signed up,agreeing to risk our lives.
I am fortunate that my hubby is still active duty, and thus I have chosen to use Tricare instead. As slow and horrible as they can be, the civilian docs they send me to have been pretty good (save a few). The military facilities docs they send me too seem to feel about spouses as the VA feels about it's vets! We are just a bunch of complainers and are sucking the healthcare funding dry,therefore they should not do any diagnostics, they should willfully misdiagnose, and when in doubt...lie or blame the patient.
Very, Very sad! In any case, the VA has created some MS Centers of Excellence at three locations. Of course that's providing you ever get your diagnosis and live in one of these three states. People covet federal healthcare programs like Tricare and VA.....to them I would say this:
Because you are paying little or no out of pocket expense, they make sure to let you know that they don't have to treat you well, as you get what you pay for ,or rather what you are not paying for!
How easily they forget what is not payed in money is payed in the promise of our lives for our country should it be needed. Why is that so cheap to them? Sorry guys! I'm getting off my giant soapbox now. :-)
-Dee
I think the worst though, is when your own family starts to listen to all of the docs. There is nothing worse than trying to get validity from those you trust.
PastorDan, also please accept my apology if I made it sound like I don't think this stuff happens to men, as well. I know it does. I think that there seems to be a general tendency to dismiss *anything* neurological as "in your head" in the absence of a clear clinical picture, at least on the part of lazy or busy or dismissive or burnt-out neurologists. I try to imagine being a neuro burnout on my 25,000th patient and simply wishing they'd all be straightforward cases...and thus dismissing any tough cases as "anxiety." I can see why they do that, but it's patently bad medical practice. And then more specifically, I think that there's an even greater, specific tendency to do that with us "hysterical" women who just can't handle stress...
Bio
Bio
Bio, I am sorry; I didn't mean to minimize the inexcusable sexist bias against which I am sure you, Quix, and many other women have fought in many career paths. Many, many times I have heard people who received a thorough explanation of rules and procedures from one of our female clerks insist on hearing confirmation of what they've just heard from someone else, typically a man. Funny how it never seems to work the other way around; when a plans examiner like myself (a male-dominated field, sadly) tells someone what's required, they never call up one of the women to question my accuracy.
My only point was that those of us on the opposite side of that great divide have also sometimes felt dismissed and discarded by doctors near and far, and probably by more than neuros.
My only point was that those of us on the opposite side of that great divide have also sometimes felt dismissed and discarded by doctors near and far, and probably by more than neuros.
Pastor Dan, et al., what I really meant was in the context of my background. I think if I'd been a man with a PhD, med school post doc, etc., they'd've taken me a lot more seriously from the get-go, looked upon me as a sort of colleague (I've had one who has done that). I think maybe Quix may have felt the same way as an MD in a similar situation. ...these were all older neuros, I'm a young-looking 40, and I'm female, and I really do think that these factors made a difference and introduced the idea of "half hysteria" to at least one of them.
I simply have persevered and used my logic and education to remain patient and continue to seek answers. The funny thing is, the neuro I'm with now was THE NEURO who gave me that **** about CD. I came back to him a year later, he recanted and asked me why I returned, and I said, "I'm a patient woman, and at the very least, you seemed interested in finding answers."
Bio
I simply have persevered and used my logic and education to remain patient and continue to seek answers. The funny thing is, the neuro I'm with now was THE NEURO who gave me that **** about CD. I came back to him a year later, he recanted and asked me why I returned, and I said, "I'm a patient woman, and at the very least, you seemed interested in finding answers."
Bio
I've ranteed in the past about my first two neuros; I won't go into it again.
I have a new twist to this situation; I've been discharged as a patient from my MS specialist and her clinic. Their explanation:
"We are disappointed that despite our provider's best efforts to deliver a high quality healthcare service, you did not seem to trust her opinion".
I'm about 7 pages into and explanation of why I did not trust her opinion, quoting her chart notes, e-mail messages, failure to respond to my request for a review of chart notes for 5 months, and much more.
I also give examples that show that her efforts to deliver a high quality health care service fell WAYYYYYYY short.
I will edit it into a factual and professional sounding complaint, quoting HIPPA violations and such, leaving out any emotional reaction that might be interpreted as hysteria.
I hope I will receive a call from my new MS Clinic soon, scheduling an appointment.
If I do happen to receive a diagnosis, I wouldn't mind if my new neuro would send a report to Dr. Small-vessel-ischemic-disease who felt I didn't trust her.
Or to Dr. I-think-your-tremors-are-from-anxiety.
Or to Dr. Possible-somatization.
Just dreaming. I'll leave the past behind more easily once I'm moving forward. I've been trying very hard for over 15 months to do so, and I hope to be moving ahead soon.
Kathy
I have a new twist to this situation; I've been discharged as a patient from my MS specialist and her clinic. Their explanation:
"We are disappointed that despite our provider's best efforts to deliver a high quality healthcare service, you did not seem to trust her opinion".
I'm about 7 pages into and explanation of why I did not trust her opinion, quoting her chart notes, e-mail messages, failure to respond to my request for a review of chart notes for 5 months, and much more.
I also give examples that show that her efforts to deliver a high quality health care service fell WAYYYYYYY short.
I will edit it into a factual and professional sounding complaint, quoting HIPPA violations and such, leaving out any emotional reaction that might be interpreted as hysteria.
I hope I will receive a call from my new MS Clinic soon, scheduling an appointment.
If I do happen to receive a diagnosis, I wouldn't mind if my new neuro would send a report to Dr. Small-vessel-ischemic-disease who felt I didn't trust her.
Or to Dr. I-think-your-tremors-are-from-anxiety.
Or to Dr. Possible-somatization.
Just dreaming. I'll leave the past behind more easily once I'm moving forward. I've been trying very hard for over 15 months to do so, and I hope to be moving ahead soon.
Kathy
biowham,
i don't think the testicles make a difference with these neuro types. and with much respect to the women i say that. with a history of pushing the envelope, it hasn't made a difference in my case to these folks.
though to some degree i know where you are coming from with regards to the bizarre trek to a diagnosis. just take a look at some of the veteran websites regarding this.
many female & male veterans have and are getting swept aside by the medical folks you speak about.
i don't think the testicles make a difference with these neuro types. and with much respect to the women i say that. with a history of pushing the envelope, it hasn't made a difference in my case to these folks.
though to some degree i know where you are coming from with regards to the bizarre trek to a diagnosis. just take a look at some of the veteran websites regarding this.
many female & male veterans have and are getting swept aside by the medical folks you speak about.
I may have the weirdest story of all, having initially been told that my symptoms for my lower half were "real," but that the ones for the upper half were CD. Yes, I was only half crazy.
Now, a year-and-a-half later, I've had two MRIs that show an upper tspine myelopathy and t2 hyperintensities in the brain in relevant areas, I've had one of the TOP neuros in the country state that I have a cspine myelopathy possibly secondary to MS, and I still do not have a final diagnosis. On the tspine myelopathies, which were described from the second MRI as "a demyelinating lesion," I simply can't get my neuro to commit. Even though it was there in April '08 and there again more clearly in March '09. Even though the spots on my brain change and accumulate. Even though I have clear clinical signs of myelopathy (abnormal superficial and deep tendon reflexes, etc.) and no signs on MRI that it can be attributed to a mechanical cause.
At least, however, no one's telling me I'm crazy any more. I keep fearing that with every doctor I see, one will say that again and dismiss me, and I keep having to remind myself that I have a TSPINE DEMYELINATING PLAQUE, meaning that it is literally not all in my head. And this is from someone (me) with postdoctoral education at one of the top medical schools in the country. I'm stable, sensible, rational, well educated...and yes, female. What the doctors see before anything else is that last factor, and I have NO DOUBT that it influences their behavior. If I showed up with all of the above and testicles? I'd've been dx'd a year ago.
Bio
Now, a year-and-a-half later, I've had two MRIs that show an upper tspine myelopathy and t2 hyperintensities in the brain in relevant areas, I've had one of the TOP neuros in the country state that I have a cspine myelopathy possibly secondary to MS, and I still do not have a final diagnosis. On the tspine myelopathies, which were described from the second MRI as "a demyelinating lesion," I simply can't get my neuro to commit. Even though it was there in April '08 and there again more clearly in March '09. Even though the spots on my brain change and accumulate. Even though I have clear clinical signs of myelopathy (abnormal superficial and deep tendon reflexes, etc.) and no signs on MRI that it can be attributed to a mechanical cause.
At least, however, no one's telling me I'm crazy any more. I keep fearing that with every doctor I see, one will say that again and dismiss me, and I keep having to remind myself that I have a TSPINE DEMYELINATING PLAQUE, meaning that it is literally not all in my head. And this is from someone (me) with postdoctoral education at one of the top medical schools in the country. I'm stable, sensible, rational, well educated...and yes, female. What the doctors see before anything else is that last factor, and I have NO DOUBT that it influences their behavior. If I showed up with all of the above and testicles? I'd've been dx'd a year ago.
Bio
Present and dues paying member of the HGC Club
Full membership came when I couldn't talk, walk, think or react and was told "classic stress!"
Thank you Doc Q for this write-up - you'd think webster would have "redefined" that definition by now - at least to include men - so sexist!
Full membership came when I couldn't talk, walk, think or react and was told "classic stress!"
Thank you Doc Q for this write-up - you'd think webster would have "redefined" that definition by now - at least to include men - so sexist!
I'm less concerned with what's in my head than I am with what's been vanishing from it.
If it weren't Sunday morning and the rest of my day not fully scheduled, I might challenge some of you for the longest rant award on this thread.
God be with each of you. May Memorial Day remind each of us to count our blessings, even though our doctors may be counting sheep.
If it weren't Sunday morning and the rest of my day not fully scheduled, I might challenge some of you for the longest rant award on this thread.
God be with each of you. May Memorial Day remind each of us to count our blessings, even though our doctors may be counting sheep.
Now that I have been diagnosod with MS, there is a part of me that woudl wants to go back to the idea that it is all in my head. I know that sounds strange.
Over hte past couple of months I was starting to believe the first neuro I had who made a snap jugdement in my case thatI I had conversion disorder. Oh, he was trying to appear as nice and caring as he could when he "reassure" me that he didn't think I was faking and that the symptoms are real whatever that is supposed to mean. But that judgement before he truly knew me really affected the care I was getting from him.
Looking back over the past year when everything went south health-wise for me as well as recalling "events" that are probably related that have been going on for years, I now realize how lucky I have been with these doctors. While my first neuro was on this CD path, thus not runnig appropriate tests, inevitably another doctor would step in and do what he wasn't doing. Those doctors included one of this neuro's colleagues who is the head of the practice he is in and the chief of neurology in the hospital that I spent 3 weeks in last year. The next was the neurosurgeon the bad neuro sent me to for a consult. Then bad neuro wanted a 2nd opinion and sent me to a former professor of his who specialized in MS and that guy stepped up to the plate to help me and was the one who finally diagnosed me.
So, sometimes we are just plain lucky and get someone or a series of someones who will go that extra mile for you so you can get some meaningful help and ultimately a diagnosis.
And, just because I finally do have a diagnosis doens't mean that my days of being seen as a "conversion" case or stress/anziety are over. I'll be ever watchful that no one puts me through this frustrating and upsetting experience again unless my problem is truly anxiety or stress.
Over hte past couple of months I was starting to believe the first neuro I had who made a snap jugdement in my case thatI I had conversion disorder. Oh, he was trying to appear as nice and caring as he could when he "reassure" me that he didn't think I was faking and that the symptoms are real whatever that is supposed to mean. But that judgement before he truly knew me really affected the care I was getting from him.
Looking back over the past year when everything went south health-wise for me as well as recalling "events" that are probably related that have been going on for years, I now realize how lucky I have been with these doctors. While my first neuro was on this CD path, thus not runnig appropriate tests, inevitably another doctor would step in and do what he wasn't doing. Those doctors included one of this neuro's colleagues who is the head of the practice he is in and the chief of neurology in the hospital that I spent 3 weeks in last year. The next was the neurosurgeon the bad neuro sent me to for a consult. Then bad neuro wanted a 2nd opinion and sent me to a former professor of his who specialized in MS and that guy stepped up to the plate to help me and was the one who finally diagnosed me.
So, sometimes we are just plain lucky and get someone or a series of someones who will go that extra mile for you so you can get some meaningful help and ultimately a diagnosis.
And, just because I finally do have a diagnosis doens't mean that my days of being seen as a "conversion" case or stress/anziety are over. I'll be ever watchful that no one puts me through this frustrating and upsetting experience again unless my problem is truly anxiety or stress.
Aside from being super tired all the time (the fatigue has reappeared wtih a vengeance), my symptoms are mostly sensory. Being tired is of course from my lifestyle and baby... no matter that i still feel this way after 10 hours sleep and by mid morning...
And these are self-reported symptoms NOT clear Clinical Signs that can hit a MD in the face. So of course these symptoms can be ignored and just put down to other things...
Am too scared of being brushed off to bring this up again with my drs... will let them focus on the stuff they have diagnosed and are comfortable dealing with... so at least they'll give me the time of day.
Like having appendicits for 3 months last year and no-one taking my reports of pain seriously because I was pregnant and it is normal for pregnant women to have abdominal pain.... The top gastro at the hospital is the one who didn't examine me, but gave me a metaphorical pat on the head and told me to come back for a checkup 6 months later - after the baby was born. Only when I couldn't walk from the pain did my Obe insist on exploratory surgery and did they find the appendicitis. So it's not just neuros that need to be roasted!!
Geez! I do have a chip on my shoulder over that one! Still!
So what? Live with it and pray and hope that it will never get bad enough to really get a proper diagnosis of anything other than I already have.
Or that they may just pick something up incidentally when checking something else (can probably get myself another MRI scheduled for the pituitary adenoma if I play up the visual symptoms some more...)...
Proud and long term member of hyper-gamma-chondria.
I am convinced it's all in my head!
And these are self-reported symptoms NOT clear Clinical Signs that can hit a MD in the face. So of course these symptoms can be ignored and just put down to other things...
Am too scared of being brushed off to bring this up again with my drs... will let them focus on the stuff they have diagnosed and are comfortable dealing with... so at least they'll give me the time of day.
Like having appendicits for 3 months last year and no-one taking my reports of pain seriously because I was pregnant and it is normal for pregnant women to have abdominal pain.... The top gastro at the hospital is the one who didn't examine me, but gave me a metaphorical pat on the head and told me to come back for a checkup 6 months later - after the baby was born. Only when I couldn't walk from the pain did my Obe insist on exploratory surgery and did they find the appendicitis. So it's not just neuros that need to be roasted!!
Geez! I do have a chip on my shoulder over that one! Still!
So what? Live with it and pray and hope that it will never get bad enough to really get a proper diagnosis of anything other than I already have.
Or that they may just pick something up incidentally when checking something else (can probably get myself another MRI scheduled for the pituitary adenoma if I play up the visual symptoms some more...)...
Proud and long term member of hyper-gamma-chondria.
I am convinced it's all in my head!
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