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Has anyone been evaluated for"Conversion Syndrome"
I went to the ER tonight because I was having a difficult time taking deep breaths. My symptoms (heavy limbs, tingling everywhere, twitching, extreme fatigue) are in a major flare and I was scared.
I was sent to psych for an eval for conversion syndrome and was referred for intensive "day therapy" for two weeks.
It has been over 2yrs since my first symptoms appeared and I am still in Limbo land with no diagnosis. On days like today, when I am unable to care for myself, and I feel "trapped in my own body", I admit, I feel like dying is a better alternative. BUT, I would never hurt myself! I felt like they thought I was suicidial.
I guess Conversion Syndrome would be an answer, but since my EMG's show actual nerve damage I never really considered it.
Does anyone have any thoughts? Maybe this IS an emotional/mental manifestation?!
PS (I do not post often...but I am a regular "lurker" on this forum. I appreciate everyone's openess and the way everyone supports each other! It is inspiring!)
I was sent to psych for an eval for conversion syndrome and was referred for intensive "day therapy" for two weeks.
It has been over 2yrs since my first symptoms appeared and I am still in Limbo land with no diagnosis. On days like today, when I am unable to care for myself, and I feel "trapped in my own body", I admit, I feel like dying is a better alternative. BUT, I would never hurt myself! I felt like they thought I was suicidial.
I guess Conversion Syndrome would be an answer, but since my EMG's show actual nerve damage I never really considered it.
Does anyone have any thoughts? Maybe this IS an emotional/mental manifestation?!
PS (I do not post often...but I am a regular "lurker" on this forum. I appreciate everyone's openess and the way everyone supports each other! It is inspiring!)
A well-educated member, Silkut, put together this extensive review of Conversion Disorder - I think you will find it interesting and helpful.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36
Keep lurking and posting - even if its not MS you are bound to learn a lot from this wise group.
be well, Laura
Thank you!
The ER doc suggested Conversion Syndrome, I had not considered it until last night. I *think* he might not be used to seeing someone as dibilatated by Neuropathy as I am, especially a 33yr old.
What I really want is to find the cause behind the neuropathy, since I had no health problems leading up to this. Hoping to one day find a cause :)
The ER doc suggested Conversion Syndrome, I had not considered it until last night. I *think* he might not be used to seeing someone as dibilatated by Neuropathy as I am, especially a 33yr old.
What I really want is to find the cause behind the neuropathy, since I had no health problems leading up to this. Hoping to one day find a cause :)
COMMUNITY LEADER
Morning,
Ok take a step back for a sec, if your current diagnosis is "Idiopathic Multiplex Neuropathy" then what you experience is NOT being caused by a mental health condition!
Where is the CD idea coming from, have 'you' assummed they are going to be evaluating you for possible Conversion Disorder or was CD brought up, either directly or by comments implying it, by one of the dr's you saw at the hospital?
You could be jumping on a train of thought thats going in the wrong direction! Think about it, the dr's obviously at the time were concerned that you were not right mentally, but if you are right that they incorrectly thought you were suicidal, then that is the more likely concern and not that your mental state is manifesting your sx's.
I also want to point out that the medications that neuropathy is typically treated with, are heavy duty mental health drugs, and it often takes a combination that includes psycho tropics to find something that works. It isn't that its a mental health condition, its just that these class of drugs can trick the brain, reducing the pain, abnormal sensation etc.
Take a step back and breath!!
Hugs........JJ
btw I just thought you might like to know that with your diagnosed condition and diagnostic test results, it is NOT consistent with MS, in MS there is no peripheral damage. In MS its the central nervous system, so the diagnostic tests (EMG) should be normal with MS.
Ok take a step back for a sec, if your current diagnosis is "Idiopathic Multiplex Neuropathy" then what you experience is NOT being caused by a mental health condition!
Where is the CD idea coming from, have 'you' assummed they are going to be evaluating you for possible Conversion Disorder or was CD brought up, either directly or by comments implying it, by one of the dr's you saw at the hospital?
You could be jumping on a train of thought thats going in the wrong direction! Think about it, the dr's obviously at the time were concerned that you were not right mentally, but if you are right that they incorrectly thought you were suicidal, then that is the more likely concern and not that your mental state is manifesting your sx's.
I also want to point out that the medications that neuropathy is typically treated with, are heavy duty mental health drugs, and it often takes a combination that includes psycho tropics to find something that works. It isn't that its a mental health condition, its just that these class of drugs can trick the brain, reducing the pain, abnormal sensation etc.
Take a step back and breath!!
Hugs........JJ
btw I just thought you might like to know that with your diagnosed condition and diagnostic test results, it is NOT consistent with MS, in MS there is no peripheral damage. In MS its the central nervous system, so the diagnostic tests (EMG) should be normal with MS.
Thank you Sarah :)
My symptoms are always present, but exacerbate during "that" time.
I don't think I have MS, if I do, it would be a very strange presentation, although not unheard of I suppose. I do have similar struggles and syptoms, which is why I like "lurking" around here.
My symptoms are always present, but exacerbate during "that" time.
I don't think I have MS, if I do, it would be a very strange presentation, although not unheard of I suppose. I do have similar struggles and syptoms, which is why I like "lurking" around here.
GB would not come every month at "that time" and then fade.
Have you tried taking any anti anxiety drugs coming up to "that time" and perhaps just beyond it to see if these sx go away?
My EB symptoms were sheer fatigue and did not return month after month. They lasted 3 days and then disappeared. This caused my doctor to run the blood tests which she followed for 3 yrs before she told me to stop being so fixated over the numbers!
Your EMG would reflect nerve damage to the muscles (I may have phrased that wrong) but would not indicate MS.
Perhaps if you put MS out of your mind and let nature bug you until something comes up. MS is a slow moving train, sometimes it takes what seems like forever to manifest itself enough to be seen. You don't want to know how long I waited for a Dx!
Have you tried taking any anti anxiety drugs coming up to "that time" and perhaps just beyond it to see if these sx go away?
My EB symptoms were sheer fatigue and did not return month after month. They lasted 3 days and then disappeared. This caused my doctor to run the blood tests which she followed for 3 yrs before she told me to stop being so fixated over the numbers!
Your EMG would reflect nerve damage to the muscles (I may have phrased that wrong) but would not indicate MS.
Perhaps if you put MS out of your mind and let nature bug you until something comes up. MS is a slow moving train, sometimes it takes what seems like forever to manifest itself enough to be seen. You don't want to know how long I waited for a Dx!
Hmm. Been "hanging" now for four years, but was blessed enough to get 2.5 years of remission. An awesome gift, looking back.
Neuro now (yesterday, anyway) seems to be focusing on the fact that I've had four "episodes" or whatever else you want to call them, during which something was clearly not right with my balance and vision, and miscellaneous other annoyances to accompany those issues.
I had a neuropsych evaluation in 2009, following which I was able to sit down and discuss the results pretty thoroughly with His Eminence the Chair of the Neuropsychology section (acclaimed author, etc.). He said I showed signs of stress brought on by having no Dx for my otherwise quite credible symptoms.
Too bad his higher-ups were such dismissive jerks.
Neuro now (yesterday, anyway) seems to be focusing on the fact that I've had four "episodes" or whatever else you want to call them, during which something was clearly not right with my balance and vision, and miscellaneous other annoyances to accompany those issues.
I had a neuropsych evaluation in 2009, following which I was able to sit down and discuss the results pretty thoroughly with His Eminence the Chair of the Neuropsychology section (acclaimed author, etc.). He said I showed signs of stress brought on by having no Dx for my otherwise quite credible symptoms.
Too bad his higher-ups were such dismissive jerks.
there are many people who are diagnosed with MS with a clear MRI. only by anamnesis. if your symptoms persisted over the course of years or you had relapses , what some people call "MS-attacks", you would eventually find a doctor to diagnose you with MS even with a clear MRI.
in any case for most autoimmune syndromes there is not a cure.
G-B syndrome is treated "mechanically" with Plasmapheresis.
basically what the docs. are telling you is that there is no irrefutable evidence in one direction or another, which is good obviously but on the other hand it leaves you "hanging" ...
in any case for most autoimmune syndromes there is not a cure.
G-B syndrome is treated "mechanically" with Plasmapheresis.
basically what the docs. are telling you is that there is no irrefutable evidence in one direction or another, which is good obviously but on the other hand it leaves you "hanging" ...
Gio,
The neuro/muscular specialist said MS and ALS were ruled out...just going by what he said ;)
Neuro and Rheumy have ruled out the rest of the list
The neuro/muscular specialist said MS and ALS were ruled out...just going by what he said ;)
Neuro and Rheumy have ruled out the rest of the list
a clear MRI rules out tumors.
Parkinson's, Sjoren and Lyme do not match much with the symptoms.
B12 deficiency, Thyroid, EBV can be tested.
negative ANA says not Lupus.
G-B seems to be the closest guess. MS and ALS can't be ruled out.
there are also some other generic definitions like "Post viral fatigue syndrome" , "Autoimmune encephalitis"
Parkinson's, Sjoren and Lyme do not match much with the symptoms.
B12 deficiency, Thyroid, EBV can be tested.
negative ANA says not Lupus.
G-B seems to be the closest guess. MS and ALS can't be ruled out.
there are also some other generic definitions like "Post viral fatigue syndrome" , "Autoimmune encephalitis"
Thank you everyone :)
My symptoms remain, as the usually do during "my time of the month". This time they are just grossly exacerbated, more than I have ever experienced.
I will jump through their "hoops" and do the therapy. What is 2wks when I've been waiting for 2yrs? It will be another thing to add to my list of ruled out diagnosis.
I posted here, bc I read that often ppl with MS are first evaluated and sometimes misdiagnose with conversion syndrome.
My "rule out" list->
MS, ALS, Parkinson's Disease, Lupus, Diabetes, Lyme Disease, brain/spinal cord tumor, Various Vitamin defceiencies, Thyroid problems, GB, Epstein Barr and sjoren's
My tests-> MRI of head and spine= all clear
LOTS of labs= all clear
EMG's= Nerve damage to all extremeties, R side worse than L
My current diagnosis-> Idiopathic Multiplex Neuropathy
My symptoms remain, as the usually do during "my time of the month". This time they are just grossly exacerbated, more than I have ever experienced.
I will jump through their "hoops" and do the therapy. What is 2wks when I've been waiting for 2yrs? It will be another thing to add to my list of ruled out diagnosis.
I posted here, bc I read that often ppl with MS are first evaluated and sometimes misdiagnose with conversion syndrome.
My "rule out" list->
MS, ALS, Parkinson's Disease, Lupus, Diabetes, Lyme Disease, brain/spinal cord tumor, Various Vitamin defceiencies, Thyroid problems, GB, Epstein Barr and sjoren's
My tests-> MRI of head and spine= all clear
LOTS of labs= all clear
EMG's= Nerve damage to all extremeties, R side worse than L
My current diagnosis-> Idiopathic Multiplex Neuropathy
Somewhere in this forum's Health Pages is one about Conversion Disorder. I happened upon it while looking for something else a few days ago.
what you refer has nothing to do with Conversion Disorder.
first of all if you say that there are findings on the EMG so how can they even mention psychiatric conditions?
moreover Conversion Disorders don't work like that. it's that type of suggestion that makes you puke when you see someone else puking for example... it's merely a psychological thing nothing to do with Neurology.
over the years they have accumulated false data on these type of syndromes by "diagnosis of exclusion"
I want you to understand this: "Diagnosis of exclusion" means that they rule out everything they know (which is a little more than nothing) and diagnose psychosis. over time they have built a whole "church" based on no evidence whatsoever.
All that to say that you shouldn't take it personally: just stick to what you feel and to people who seem to recognise your symptoms and give concrete and plausible answers.
Suerte...
first of all if you say that there are findings on the EMG so how can they even mention psychiatric conditions?
moreover Conversion Disorders don't work like that. it's that type of suggestion that makes you puke when you see someone else puking for example... it's merely a psychological thing nothing to do with Neurology.
over the years they have accumulated false data on these type of syndromes by "diagnosis of exclusion"
I want you to understand this: "Diagnosis of exclusion" means that they rule out everything they know (which is a little more than nothing) and diagnose psychosis. over time they have built a whole "church" based on no evidence whatsoever.
All that to say that you shouldn't take it personally: just stick to what you feel and to people who seem to recognise your symptoms and give concrete and plausible answers.
Suerte...
COMMUNITY LEADER
i hate this stupid glitch I just lost my post again, grrrrrrr
here is the short version, sorry....
Conversion Disorder (CD) is a very complicated, very rare mental health condition, the stat in my head is only 1% (dont quote me), Health Anxiety is the more common and its similar though not as complex. It is possible to have a dx physiological condition and still also experience health anxiety (psychological) due to fear and worry of the dx condition.
There is nothing you have written that is ringing any bells for me, usually there are signs within the post, that can indicate that a mental health condition like health anxiety, 'could' be an issue, though being depressed about this uncertaintee would not be unexpected (hugs)!
I like many of the members here, have had my mental health assessed, due to the nature of the sx's there isn't a lot of mental health conditions that can manifest as or mimic physiological conditions. So whilst Conversion Disorder wasn't spicifically what i was getting assessed for, i still have no doubt that i was being evaluated for it. Unfortunately or fortunately, depending on how you want to look at it, i didn't have anything wrong with my mental health, i expected that but it was nice to get the paper work stating i was mental sound.
Honestly, you do have diagnostic evidence of nerve damage but not what is or has caused it, without that its difficult to say if what you experience is fully explained by the underlying condition or not. It probably is but being in limbo and if the underlying condition is not being properly treated, well it can really screw up your mental health, I dont think its a bad thing to get your mental health checked out.
Cheers.........JJ
here is the short version, sorry....
Conversion Disorder (CD) is a very complicated, very rare mental health condition, the stat in my head is only 1% (dont quote me), Health Anxiety is the more common and its similar though not as complex. It is possible to have a dx physiological condition and still also experience health anxiety (psychological) due to fear and worry of the dx condition.
There is nothing you have written that is ringing any bells for me, usually there are signs within the post, that can indicate that a mental health condition like health anxiety, 'could' be an issue, though being depressed about this uncertaintee would not be unexpected (hugs)!
I like many of the members here, have had my mental health assessed, due to the nature of the sx's there isn't a lot of mental health conditions that can manifest as or mimic physiological conditions. So whilst Conversion Disorder wasn't spicifically what i was getting assessed for, i still have no doubt that i was being evaluated for it. Unfortunately or fortunately, depending on how you want to look at it, i didn't have anything wrong with my mental health, i expected that but it was nice to get the paper work stating i was mental sound.
Honestly, you do have diagnostic evidence of nerve damage but not what is or has caused it, without that its difficult to say if what you experience is fully explained by the underlying condition or not. It probably is but being in limbo and if the underlying condition is not being properly treated, well it can really screw up your mental health, I dont think its a bad thing to get your mental health checked out.
Cheers.........JJ
Hi, how are you feeeling now? I only read anbout conversion disorder recently; I didn't realise there was such a thing but it must be very frustrating and scary since the sufferer genuinely feels all the symptoms. All I would say is that the 'trapped in your own body' sensation & not being able to breathe deely doesn't really sound failiar to me as an MS symptom and if you've had MRI's or a LP etc then I would have thought 'something' would have shown up by now as you say its been two years now. When will they give you the outcome of your evaluation? I think if you're getting anxious then it could definitely be making these symptoms worse.
Take care!
Take care!
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