Aa
I didn't see this diagnosis coming!
So, I "officially" don't have a diagnosis of MS. All of the testing, MRI's, blood work to rule out mimics are normal. My Mayo diagnosis is functional gait disorder, which in essence, they are saying, that I have created my own problem. I'm not walking correctly because I somehow believe that I can't walk correctly !
This is the only symptom that was addressed with the MS specialist...no mention of everything else I've experienced over the past 8 months (numbness, tingling, vibration feeling in my legs, stiffness in neck, saying the wrong words, fatigue). I really couldn't believe what I was hearing! And although once again I showed strong hyperreflexia of my left knee, which has always been noted by the Neuro's on my exam notes...that finding was not added to this MS Neuro's note, but "symptoms of depression" was.
They are suggesting that I go thru "therapy" which involves PT, OT (for lack of good arm swing) and a psychologist. I understand that the only way this therapy is going to work, is if I truly believe this to be my diagnosis. And, to be honest...I don't.
They can't tell me why I stood and fell for no reason, why I now have vestibular damage, the hyperreflexia now appears to be conveniently left off the notes in favor of a suggestive depressive disorder, which I can only assume helps validate their belief that I have a conversion disorder and are implying that I am imagining all the other symptoms. He also felt that documenting that I was tearful during the appointment was important information, when I've shed tears during all my other appts (because this has been an awful and scary experience) and not one other doctor included that in their write ups. Seems fishy, or am I reading too much into this?
I am so torn.....really, who am I to question the Mayo? How do I wrap my head around the fact that MS is a disease of exclusion and that it has been verbalized by the doctors that spine lesions can be hard to detect (especially on a 1.5 MRI) , and despite that...I am (in not so many words) being labeled crazy?
If it were as simple as me thinking myself "sick to be sick", shouldn't it be just the same for to me think myself "well", to be "well"? Because believe me...that's all I've ever been praying and wishing for since this all started.
It's extremely hard to deal with a diagnosis that's not tangible...
This is the only symptom that was addressed with the MS specialist...no mention of everything else I've experienced over the past 8 months (numbness, tingling, vibration feeling in my legs, stiffness in neck, saying the wrong words, fatigue). I really couldn't believe what I was hearing! And although once again I showed strong hyperreflexia of my left knee, which has always been noted by the Neuro's on my exam notes...that finding was not added to this MS Neuro's note, but "symptoms of depression" was.
They are suggesting that I go thru "therapy" which involves PT, OT (for lack of good arm swing) and a psychologist. I understand that the only way this therapy is going to work, is if I truly believe this to be my diagnosis. And, to be honest...I don't.
They can't tell me why I stood and fell for no reason, why I now have vestibular damage, the hyperreflexia now appears to be conveniently left off the notes in favor of a suggestive depressive disorder, which I can only assume helps validate their belief that I have a conversion disorder and are implying that I am imagining all the other symptoms. He also felt that documenting that I was tearful during the appointment was important information, when I've shed tears during all my other appts (because this has been an awful and scary experience) and not one other doctor included that in their write ups. Seems fishy, or am I reading too much into this?
I am so torn.....really, who am I to question the Mayo? How do I wrap my head around the fact that MS is a disease of exclusion and that it has been verbalized by the doctors that spine lesions can be hard to detect (especially on a 1.5 MRI) , and despite that...I am (in not so many words) being labeled crazy?
If it were as simple as me thinking myself "sick to be sick", shouldn't it be just the same for to me think myself "well", to be "well"? Because believe me...that's all I've ever been praying and wishing for since this all started.
It's extremely hard to deal with a diagnosis that's not tangible...
Thank you everyone for responding...I will continue to "solider on", thank you for your support! =)
Karen
Karen
I can relate. From what I can tell (the doctor kept telling me to be quiet) my neurology exam that I waited 6 months for, was normal. I told myself also that I was going to walk home normally from that appointment and maybe this is all in my head. Walking was normal for a while but then became difficult. When I got home, I couldn't move, pain was awful and I had extreme fatigue...
It's not in my head. It is in my body. I doubt I have MS, so I guess it is time for me to leave you good folks alone..
Unfortunately with little proof of what is wrong with me, I may be thrown to the lions.
It's not in my head. It is in my body. I doubt I have MS, so I guess it is time for me to leave you good folks alone..
Unfortunately with little proof of what is wrong with me, I may be thrown to the lions.
At one time or another many of us have been down the 'conversion-type' disorder path. I know I have but after doing as JJ suggested, I'm now officially cleared - I'm not mental, who would have guessed lol. Neuro now admits something is definitely wrong but won't commit to a dx yet.
With regards to getting upset at appointments, if you don't they'll just as likely tell you it's because you have conversion disorder so you can't win. It wasn't until I told the psychologist that the reason I didn't shed tears and get upset at appointments/visits to the ED was because I had been treated so badly by one particular doctor I was determined not to come across as an upset neurotic woman. Their opinion - if you don't get upset at the situation, you're still mental!!
My advice would be to follow up with a psychologist because if nothing else it gives you someone who isn't in your family or immediate circle of friends that you can have a darned good vent to. I'm so pleased I saw a Psychologist as he has also filled the Neuro in on things that you never get time to in an appointment and we're both now on the same page.
The other thing I did was read up on exactly what conversion disorder is and all about Freud's contribution to this field. His 'wandering womb' theory had me in hysterics.
Best wishes
Poppy
With regards to getting upset at appointments, if you don't they'll just as likely tell you it's because you have conversion disorder so you can't win. It wasn't until I told the psychologist that the reason I didn't shed tears and get upset at appointments/visits to the ED was because I had been treated so badly by one particular doctor I was determined not to come across as an upset neurotic woman. Their opinion - if you don't get upset at the situation, you're still mental!!
My advice would be to follow up with a psychologist because if nothing else it gives you someone who isn't in your family or immediate circle of friends that you can have a darned good vent to. I'm so pleased I saw a Psychologist as he has also filled the Neuro in on things that you never get time to in an appointment and we're both now on the same page.
The other thing I did was read up on exactly what conversion disorder is and all about Freud's contribution to this field. His 'wandering womb' theory had me in hysterics.
Best wishes
Poppy
Karen -
Who are you to question the Mayo? You are the person who has lived in that body for lo these many years, and I suspect you have a better understanding of your quirks than any doc. You have every right to push back.
Conversion disorder. Don't get me started on ANY of the DSMs. One, it's helpful to remember that conversion disorder is just the lipstick the psychology world put on the venerable old classification so often applied to women: hysteria. It gives male doctors who are lazy and stumped, an easy out. They think. I would be livid, and would likely point out, rudely I expect, that what amounts to a diagnosis of hysteria went out with high-button greaves, and that I do not accept his expertise to diagnose my mental state any more than I accept my GP's ability to adequately diagnose a neurological disorder. And oh yeah, if I cry during an appointment, it's NOT an abnormal response you moron, it's because I'm stressed out, tired of fighting through what should be normal activities, and that's how I react because our culture allows me that release, you stone-hearted misogynist b*****d. Then I'd get my records, cool down, and complain calmly but pointedly to the head of his department.
Two, it is very helpful to remember that the National Institute of Mental Health in 2013, REJECTED the DSM-5, saying, “Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure." The analysis of that little gem would take more time than I have, but in any case I would bet good money that your neuro knows only bare bones about the DSMs and likely is working off his recollections of an old one, and has zero knowledge or give a hoot about the gargantuan flaws in the new one. He just knee-jerks and applies "hysteria" to get rid of you.
This bit explained a bit of the differences between the DSM-IV and the DSM V :
Medically Unexplained Symptoms
"DSM-IV criteria overemphasized the importance of an absence of a medical explanation for the somatic symptoms. Unexplained symptoms are present to various degrees, particularly in conversion disorder, but somatic symptom disorders can also accompany diagnosed medical disorders. The reliability of medically unexplained symptoms is limited, and grounding a diagnosis on the absence of an explanation is problematic and reinforces mind -body dualism. The DSM-5 classification defines disorders on the basis of positive symptoms (i.e., distressing somatic symptoms plus abnormal thoughts, feelings,and behaviors in response to these symptoms). Medically unexplained symptoms do remain a key feature in conversion disorder and pseudocyesis because it is possible to demonstrate definitively in such disorders that the symptoms are not consistent with medical pathophysiology."
Don't you just love that? It mentions distressing symptoms while pathologizing any normal and understandable distressed response to them as evidence of mental problems. Heck, I'd be abnormal if I DIDN'T get upset! Easy out for a lazy doc and highlights how doctors of all stripes have passed on the truly difficult work of making a call on clinical signs in lieu of what amounts to a technology-driven crutch. (For all the Monty Python fans here, the over-reliance on "the machine that goes BING!!").
I would take ess's advice - since you likely have access to more than one place with expertise in MS, I would get away from the Mayo and to one of the others available. I'm sure it will take some effort, but I would not let them diagnose my mental state or make ME responsible for what was happening to me just because they can't figure it out.
I'm rooting for ya,
Karen
Who are you to question the Mayo? You are the person who has lived in that body for lo these many years, and I suspect you have a better understanding of your quirks than any doc. You have every right to push back.
Conversion disorder. Don't get me started on ANY of the DSMs. One, it's helpful to remember that conversion disorder is just the lipstick the psychology world put on the venerable old classification so often applied to women: hysteria. It gives male doctors who are lazy and stumped, an easy out. They think. I would be livid, and would likely point out, rudely I expect, that what amounts to a diagnosis of hysteria went out with high-button greaves, and that I do not accept his expertise to diagnose my mental state any more than I accept my GP's ability to adequately diagnose a neurological disorder. And oh yeah, if I cry during an appointment, it's NOT an abnormal response you moron, it's because I'm stressed out, tired of fighting through what should be normal activities, and that's how I react because our culture allows me that release, you stone-hearted misogynist b*****d. Then I'd get my records, cool down, and complain calmly but pointedly to the head of his department.
Two, it is very helpful to remember that the National Institute of Mental Health in 2013, REJECTED the DSM-5, saying, “Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure." The analysis of that little gem would take more time than I have, but in any case I would bet good money that your neuro knows only bare bones about the DSMs and likely is working off his recollections of an old one, and has zero knowledge or give a hoot about the gargantuan flaws in the new one. He just knee-jerks and applies "hysteria" to get rid of you.
This bit explained a bit of the differences between the DSM-IV and the DSM V :
Medically Unexplained Symptoms
"DSM-IV criteria overemphasized the importance of an absence of a medical explanation for the somatic symptoms. Unexplained symptoms are present to various degrees, particularly in conversion disorder, but somatic symptom disorders can also accompany diagnosed medical disorders. The reliability of medically unexplained symptoms is limited, and grounding a diagnosis on the absence of an explanation is problematic and reinforces mind -body dualism. The DSM-5 classification defines disorders on the basis of positive symptoms (i.e., distressing somatic symptoms plus abnormal thoughts, feelings,and behaviors in response to these symptoms). Medically unexplained symptoms do remain a key feature in conversion disorder and pseudocyesis because it is possible to demonstrate definitively in such disorders that the symptoms are not consistent with medical pathophysiology."
Don't you just love that? It mentions distressing symptoms while pathologizing any normal and understandable distressed response to them as evidence of mental problems. Heck, I'd be abnormal if I DIDN'T get upset! Easy out for a lazy doc and highlights how doctors of all stripes have passed on the truly difficult work of making a call on clinical signs in lieu of what amounts to a technology-driven crutch. (For all the Monty Python fans here, the over-reliance on "the machine that goes BING!!").
I would take ess's advice - since you likely have access to more than one place with expertise in MS, I would get away from the Mayo and to one of the others available. I'm sure it will take some effort, but I would not let them diagnose my mental state or make ME responsible for what was happening to me just because they can't figure it out.
I'm rooting for ya,
Karen
Conversion disorder, ugh! How many people actually have this? Practically none. How many non-psychiatrists from hotshot institutions rattle off this supposed diagnosis to cover their lack of better ideas? Plenty. How many patients or would-be patients are hurt by this, psychically or otherwise? God knows, but I feel for them.
If you are in Minnesota, the Mayo is revered, practically worshipped. Some of their doctors, by no means all but it seems particularly prevalent in the neuro world, believe all this hype. We've had so many horror stories from hapless posters simply trying to get to the bottom of whatever might ail them being rudely dismissed after putting all their eggs in that basket. Not to mention the Mayo's seemingly arbitrary 'rules' about O-bands in LP, disagreeing with the rest of the MS medical world. So for me, I'd certainly Hold the Mayo.
Where I live, Hopkins is the Exalted One. Plastered all over their hallways are framed notices that once again Hopkins has been named numero uno in this that and the other. I have been told by several people employed there in the past that Hopkins feels it's fine to pay them less than the going rate, because 'it's an honor to work for Hopkins.' As if honor ever paid a bill. Hopkins rests on its laurels quite a bit.
Luckily, though there is a lot of competition as well, so they are far from the only game in a town with excellent medical resources standard and ubiquitous. That does reduce a bit of the swagger.
If I sound bitter or dismissive of Hopkins, it might surprise you to know that that's where I go for MS treatment. This started years ago when I learned that Hopkins was the only place in town at that time providing 3T MRIs on an outpatient basis.I've had pretty good luck there, personally, so I'm not complaining, just being realistic. Above all I'm a realist and a pragmatist.
If I were really dissatisfied, there's another well-regarding MS clinic nearby, and many more resources down the road in DC and environs. Not everyone has all these choices, which can result in frustration big time. But I urge anyone casually dismissed without proper testing and clinical examination to rest up a bit, then marshal up your energy and start over elsewhere. The squeaky wheel gets the oil.
ess
If you are in Minnesota, the Mayo is revered, practically worshipped. Some of their doctors, by no means all but it seems particularly prevalent in the neuro world, believe all this hype. We've had so many horror stories from hapless posters simply trying to get to the bottom of whatever might ail them being rudely dismissed after putting all their eggs in that basket. Not to mention the Mayo's seemingly arbitrary 'rules' about O-bands in LP, disagreeing with the rest of the MS medical world. So for me, I'd certainly Hold the Mayo.
Where I live, Hopkins is the Exalted One. Plastered all over their hallways are framed notices that once again Hopkins has been named numero uno in this that and the other. I have been told by several people employed there in the past that Hopkins feels it's fine to pay them less than the going rate, because 'it's an honor to work for Hopkins.' As if honor ever paid a bill. Hopkins rests on its laurels quite a bit.
Luckily, though there is a lot of competition as well, so they are far from the only game in a town with excellent medical resources standard and ubiquitous. That does reduce a bit of the swagger.
If I sound bitter or dismissive of Hopkins, it might surprise you to know that that's where I go for MS treatment. This started years ago when I learned that Hopkins was the only place in town at that time providing 3T MRIs on an outpatient basis.I've had pretty good luck there, personally, so I'm not complaining, just being realistic. Above all I'm a realist and a pragmatist.
If I were really dissatisfied, there's another well-regarding MS clinic nearby, and many more resources down the road in DC and environs. Not everyone has all these choices, which can result in frustration big time. But I urge anyone casually dismissed without proper testing and clinical examination to rest up a bit, then marshal up your energy and start over elsewhere. The squeaky wheel gets the oil.
ess
Karen,
Great advice from everyone here and I'm glad to read you will go get that evaluation done. The only way to deal with this now is head-on . the dx of your problems stemming from a psychological cause is now on the record and you have to get it corrected by doing this extra work. I'm so sorry you are at this point but as JJ wisely points out, you will be better off one way or another by going through these steps.
Laura
Great advice from everyone here and I'm glad to read you will go get that evaluation done. The only way to deal with this now is head-on . the dx of your problems stemming from a psychological cause is now on the record and you have to get it corrected by doing this extra work. I'm so sorry you are at this point but as JJ wisely points out, you will be better off one way or another by going through these steps.
Laura
It's ridiculous how often medical professionals will call something a conversion disorder. True conversion disorders are pretty rare events. Hang in there.
Sometimes the evidence is subclinical, and they just don't want to bother looking anymore. Depression can exist in conjunction with anything. If you don't buy into their explanation, don't give up.
Sometimes the evidence is subclinical, and they just don't want to bother looking anymore. Depression can exist in conjunction with anything. If you don't buy into their explanation, don't give up.
Thank you all! I plan on going to "get my head checked" and should anything be found of the abnormal nature, I can assure it is because of the craziness of this whole diagnostic process! I honestly don't know how anyone comes out of it with their head still straight!
I'm an easy going, happy go lucky person and I guess, naive to so much! I think I've turned into a skeptic and wizened up to the ways of the health care system and the unnecessary and ridiculous struggles those seeking help have to go thru to get care. I'm frustrated for every person and their journey.
So, I am practicing "mind over matter" today and walking around telling myself I do not have MS, and guess what...my left leg is still walking wonky and having that odd sensation of "numbness, gnawing, awareness" feeling. Guess I have to try a little harder to "heal" myself. Hope it is as simple as that!
Thanks again, I appreciate and care for each and every person I've been able to "meet" here and continue to wish you all well!
Karen
I'm an easy going, happy go lucky person and I guess, naive to so much! I think I've turned into a skeptic and wizened up to the ways of the health care system and the unnecessary and ridiculous struggles those seeking help have to go thru to get care. I'm frustrated for every person and their journey.
So, I am practicing "mind over matter" today and walking around telling myself I do not have MS, and guess what...my left leg is still walking wonky and having that odd sensation of "numbness, gnawing, awareness" feeling. Guess I have to try a little harder to "heal" myself. Hope it is as simple as that!
Thanks again, I appreciate and care for each and every person I've been able to "meet" here and continue to wish you all well!
Karen
JJ is right on "Hold the Mayo" Many people have been shrugged of the Mayo. It is like my doctor saying my weakness on one side and double vision were depression. This is the same doctor who sent me to the neurologist after doing a neuro exam. I said okay so how could depression only effect the left side of my body. She walked out and called a MS Specialist.
You diagnosis means I don't know so I have to come up with something because I am at the Mayo and we can't admitt we don't know.
Alex
You diagnosis means I don't know so I have to come up with something because I am at the Mayo and we can't admitt we don't know.
Alex
COMMUNITY LEADER
Hey babe.......hugs!
Have you heard the saying 'hold the mayo'?
When i first joined the community, it was a pretty common line around here, for reasons beyond my understanding, there were many MSers being denied or delayed their dx by Mayo until all of Mayo's boxes where ticked, problem with doing that is that MS doesn't know or play along with these rules.......having said that though, it doesn't mean Mayo is technically wrong in the way they box tick to diagnose, I suppose at the end of the day, it just means that like every where else, they don't always get it right!
Functional is not as easily understood (by non medical personnel) as meaning psychological caused eg health anxiety, conversion disorder etc but that is what 'functional' equates too when all is said and done. One of the problems with a psychological causation idea, is that it's commonly diagnosed with out any psychological evidence to support the validity of it.
Unfortunately mental health conditions are a potentially alternate, but non organic medical conditions are understandably, not what anyone can easily believe is the cause of their physical issues. I personally didn't wait longer than 24 hours before i had an appointment, I genuinely wanted answers no matter what the outcome.....
I am a strong advocate of everyone who gets the psychological idea put on their list of potential causes, to not dismiss it out right but to seriously get their mental health fully assessed by a psychiatrist or psychologist. Please take it as seriously as you would any other alternate medical condition, get the tests to prove or disprove and know for sure, if there really is any basis for a psychological issue being the direct causation!
And in the mean time, gather all your test evidence together and consider your options, one of which maybe to get another neurological opinion once you've explored the potential psychological health angle.....
Hugs.............JJ
Have you heard the saying 'hold the mayo'?
When i first joined the community, it was a pretty common line around here, for reasons beyond my understanding, there were many MSers being denied or delayed their dx by Mayo until all of Mayo's boxes where ticked, problem with doing that is that MS doesn't know or play along with these rules.......having said that though, it doesn't mean Mayo is technically wrong in the way they box tick to diagnose, I suppose at the end of the day, it just means that like every where else, they don't always get it right!
Functional is not as easily understood (by non medical personnel) as meaning psychological caused eg health anxiety, conversion disorder etc but that is what 'functional' equates too when all is said and done. One of the problems with a psychological causation idea, is that it's commonly diagnosed with out any psychological evidence to support the validity of it.
Unfortunately mental health conditions are a potentially alternate, but non organic medical conditions are understandably, not what anyone can easily believe is the cause of their physical issues. I personally didn't wait longer than 24 hours before i had an appointment, I genuinely wanted answers no matter what the outcome.....
I am a strong advocate of everyone who gets the psychological idea put on their list of potential causes, to not dismiss it out right but to seriously get their mental health fully assessed by a psychiatrist or psychologist. Please take it as seriously as you would any other alternate medical condition, get the tests to prove or disprove and know for sure, if there really is any basis for a psychological issue being the direct causation!
And in the mean time, gather all your test evidence together and consider your options, one of which maybe to get another neurological opinion once you've explored the potential psychological health angle.....
Hugs.............JJ
Karen, I am sorry you are going through this. I don't know what to say. If you have clinical signs this makes no sense. What do your mris show? Whatever it is, stay strong.
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