How many first dxed as conversion disorder?
AnonymousJuly 7, 2008 at 7:42 pm
I’ve got my first EMG coming up on Wednesday to determine whether or not I have CIDP. The neuro that is doing it, as my boyfriend said, seems to only be doing it out of pity. While I was in his office, he said that he believes what I have is not “organic.”
The thing is, I’m going through and reading so much of what you all have endured and realizing I’m not the only one who has gone through this. I have had symptoms of Miller-Fisher CIDP for a year and a half, with a possible cause identified (C. jejuni), and I’m on my third neuro. I came down with this at quite possibly the least stressful time in my life!
Who else had to hear they were mental before getting a concrete diagnosis? I’d love to hear stories — I need the encouragement before my NCS/EMG.
AnonymousJuly 7, 2008 at 8:01 pm
I really think a lot of people have emotional causes as one of or THE first diagnosis because this disease is so variable in manifestations and in testing. I was not told that it was a conversion disorder and my first neurologist believed me, but when she went off-service the “on service” neurologist told me that it was all in my head and discharged me from the hospital. This was very scarey because each day was bringing more and more of my nervous system shutting down and I am known as a pretty “down to earth” person. I still fume about this because he did this in front of residents and medical students with whom I interact at the hospital since I was admitted to the medical center where I work. People at work also think/thought that my symptoms were due to “burn-out” in my job because I worked so much. That is about the stupidist thing I have ever heard. I love my job and I love working and I have done everything possible to keep working despite this illness. People just do not understand. Neurologists, I think, try hard to find a explanation that makes sense based on anatomy of the brain and spinal cord. GBS is an antibody mediated process that can affect any part of the peripheral nervous system and it will not necessarily fit into a brain pattern, because it isn’t supposed to (DAH!). Believe in yourself. Believe in what you feel and stand firm. That being said, there would be a lot of advantages to this if this were mental–because it would not cause long term damage to the nerves. So it would not be all bad….
July 7, 2008 at 11:26 pm
Kevin’s first dx with tripping, not being able to dress himself, get up from the floor, hold a rag or pencil was because of conversion disorder. We were given a card with a peds psych number and a card for myself, since I was told I probably caused the disorder due to pressuring Kevin in sports. We never even played sports before that year and Kevin just wanted to try baseball for fun. Not to mention we clearly are not an athletic family!!! We owed that doc $175 dollars or some amount like that because his bill was applied to deductable, I sent him our cidp dx and told him consider himself lucky I do not sue him. (he started collection against us and his attorney sent a letter, \that is when I sent my letter and never heard from him again or saw the bill again.) Unbelievably, I sent a letter to the hospital administrator explaining the situation and they actually sent a letter back apologizing for Dr. Steven Coker’s error and lack of judgement. They also sent us a gift card for $150, go figure!!
AnonymousJuly 8, 2008 at 1:07 am
Britt, I don’t have the strength to write my story, and I also don’t want to discourage you with all that I have been told by local neuros. I will say I was originally dxed with gbs in aug 05, my 1st paralysis event. Then after I was transferred to another hospital for rehab, the psych dr(and I use that word very loosely!) told me I was suicidal and my paralysis was caused by mental issues—WHAT??!!! I told him about my death experience and he didn’t bother asking me where it took place–which was at my Drs’ office from a shot my nurse administered, verses what he assumed was at home at my own hands as an overdose—I would Never do such a thing! Sooo, since this psych dr labeled me as a mental case, suicidal, with conversion disorder, all neuros except 1 in my area went off of his dx and ignored All facts and got the facts that they did write down all wrong. Needless to say I’m still trying to get a dx other than what my pcp knows is the correct dx, and thats why I’m seeing a Fantastic neuro at U of Michigan, who actually is looking at the facts and not by a wrong labeled dx made by 4 other neuros and a mousey psych dr. Since I have been hospitalized 5 times for paralysis and have severe fatigue and soo many residuals that have nothing to do with my mind, I know it is not in my head–and a few other psych Drs who know me know its not in my head also. All I can say, in support of you is never ever give up, and follow your heart and mind, and remember to listen to your body and what you are feeling-nobody knows better than you do.
Thinking back about what the mousey psych told me to do I have to laugh–he had noticed I had been seeing one of his department drs-I was seeing this other dr for biofeedback training only-he assumed it was for depression etc. and he advised me to continue seeing him for my mental disorders—which of course is what makes me want to be away from my family for weeks at a time every few months or soo–I truly think he thought I enjoyed being in the hospital! I have asked other neuros who actually told me its in my mind, Why would anyone want to do something like this to themselves, and most of all How would that be possible?! The looks I got answered my questions louder and truer than voices could–its impossible!!! especially when all gastro functions stop during the paralysis events, like mine did. I also ask if my mind is soo powerful than why am I not worth millions?:D
Please don’t be discouraged if the results from your ncv/emg don’t give you the dx, they aren’t the tell all test either. I have had 12 so far with plans for another in a few weeks. its all in the interpretation and the quality of the test, and even with that being top notched its still not a true or false answer to a dx. Please keep us updated. Take Care.
AnonymousJuly 8, 2008 at 3:56 pm
Emily’s disease started with pains in her arms & legs. We were told it was growing pains. I now cringe when someone suggests her pains are from that.
Her first real dx was GBS with Miller Fisher. That was at the hospital in Dec 05. Even though they dx’d her & treated her with IVIG within 2 days of being admitted, they kind of treated my husband & I like we had done something to her. Then they asked all kind of questions about her mental health & her home life. I remember someone saying that a stressful home life can cause these kinds of problems with kids.
Luckily (for them) no one actually came out & directly said they thought it was mental or our fault. I would have probably kicked them in the shin, LOL. I was not in the right mindset to hear that crap then. I cannot imagine feeling those pains for yourself & being told it’s in your mind.
AnonymousJuly 9, 2008 at 3:19 am
My symptoms started suddenly in and had progressed within a few hours so i did the right thing and went off to the local ER (they advertise on TV here not to ignore warning signs of stroke and i had blurred vision, slurred speech, pins and needles in arms and weakness) The doctor didnt take me seriously, said my voice sounded normal to him and that i was overreacting! He got a speech pathologist to come and look at me and luckily she confirmed my palate wasnt working and it was most likely neurological. That got him on the phone to a neurologist and thinking back, the neuro must have had a fair idea what it was as he got me an appt the next day (pretty quick by neuro standards hey!). They tested my swallow and were going to let me home but offered me a bed overnight seeing i was so “anxious”. By the next morning i couldnt even walk and had to go to the neuro by ambulance. The neuro was waiting for me and diagnosed me in 5 mins. I was admitted immediately and within 24 hours was in ICU on a vent. I dint go back to my local hospital for 5 weeks but when i was transferred back for rehab, guess who my doctor was – the same one who treated me in the ER. I managed to bite my tongue and only said “you didnt believe me did you” and he admitetd he had thought i was overreacting. Sorry for the long rant, but i thank god i did go downhill so quickly, as it was a lot harder to ignore when they had seen my deteriorate before their eyes! I hate to think what would have happened if i did go home and couldnt walk, or worse couldnt breathe. The nurse who was on the morning i was transferred to ICU said i went into respiratory distress very quickly and she had to fight to get me admitted to ICU! Imagine if it had happened at home.
You would think that doctors would be aware of the possibility of GBS and how quickly it can progress and would keep an eye out for it when people present with seemingly vague symptoms.
AnonymousJuly 9, 2008 at 4:23 am
Some years ago my friend took me to the ER when I was critically ill with Acute Pancreatitis. The ER doc told me I was “crazy”-why-we don’t know. He refused to exam me, do any tests and told me to get out.I hadn’t done anything unusual while on the exam table.
Later another doctor did a sonogram. OOOps-I have Pancreatitis and was going down hill. It was a small hospital and they didn’t have the facilities for someone as sick as me. They debated if I’d live long enough for a critical care ambulance ride to a nearby major hospital.The head doctor told me I’d die on route-that was nice of him. I was transferred, somehow I made it and then was told I’d be in there 6 to 12 months. So much for someone who originally was faking being ill.
If I’d been sent home the night I went to the ER I would had died.
About having CIDP. It was a long hard road. Doctors are afraid of patients who have chronic pain and unusual symptoms they have little education about. So they are programmed to first think-hhmm-is this real??? They hand you pills not diagnoses.The medical records that are sent to each new doctor you see have info that taints further diagnoses. Get a copy of all your records to see what’s written in there or ask to review. By law they must be given to you.
If doctors think the majority of patients have a mental illness then why aren’t 90% of them psychiatrists??
I’ve talked to many MS/CIDP folks and they were told it was mental or just plain lazy-even by their own family.Over and over I’ve heard of doctors yelling at patients to stop wasting their time with ridiculous symptoms.Thank goodness I went to a good neurologist to consult about the 2 back surgeries that were suppose to cure my almost useless legs. He gawked at my condition and said lady you’ve in bad shape. By then I was-It was almost too late.But I finally had found someone who knew enough to diagnose.
Keep on trying-take a friend/advocate with you. Be adamant. It may be a even rarer illness than CIDP but find someone who will help.Someone who believes in you.
AnonymousJuly 9, 2008 at 12:25 pm
It saddens me to see just how many people have to be told they are crazy before they get to the root of their pain. Fortunately, I’m feeling much stronger and better equipped to walk in there today and make sure I’m treated the right way. Limekat, I am taking my boyfriend with me, and he already knows he’s allowed to interfere if I’m getting pushed around 🙂
I just found it so damn funny that all of these symptoms started during one of the least stressful times in my life — school was very manageable, and that can really be what gets to me and stresses me out most of the time. My life in general hasn’t exactly been “stress-free”, but I have never even had so much as a stress headache prior to the accumulation of all these symptoms!! So how my body suddenly took on this ability to convert all of the stresses of daily life into physical pain is a little bit beyond me.
Thanks to everyone who shared your experiences — most likely, I’ll be in my EMG today holding on to those thoughts and staying optimistic because of them. I’ll be sure to let everyone know how it goes 🙂
AnonymousJuly 9, 2008 at 6:30 pm
Please tell me your symptoms or refer me to where you posted them if you already have. I posted mine a few weeks back titled “Do I have GBS -In hospital for 5 weeks” I have been diagnosed with conversion disorder as well and had no EMG. I have gotten few responses to my story.
AnonymousJuly 10, 2008 at 11:29 am
Sorry we have missed you! Where did you post and I’ll go have a look? I too was told I was crazy, that there was something at home I wasn’t dealing with. My doctor told me to go home and read the Bible and eat hibiscus flowers. Okay, so he was a quack. He told me there was nothing wrong with me and if there was he would eat his hat. My mom was a nurse at the hospital where I had orignally gone. I was transferred out by another doctor and when the “quack” heard what I had he went to my mom and apologized. She told him she wasn’t the person he needed to apologize to and that when he talked to me he had better have some salt and pepper handy ’cause her daughter was going to hold him to his promise to eat his hat! LOL.
AnonymousJuly 17, 2008 at 10:47 pm
Sorry I have not replied before now. I am still in skilled care-9 weeks on Sunday. I think it is on page 3. THe title is “Please help-do I have GBS-5 weeks in hospital.” Thanks for looking;o) I did not get many replies. This has been tough. I still can hardly walk. My bowels still are a mess, taking alot of stuff, looking 7 months pregnant. They are looking to make me wheelchair idependant to get me home.
AnonymousJuly 17, 2008 at 11:59 pm
When I first was hospitalized for 5 weeks I was shocked
to see Conversion Disorder…(possible GBS) on my records.
Especially since my doctors kept telling me it was GBS
later when it became CIDP I asked them to add a note to
my file stating that it was definitely GBS. I did not start
to get better until I started IVIG treatment. I was almost
90% and then relapsed 18 months later and have never
been the same. Take it easy and try and find a doctor who
will “listen” to you.
July 17, 2008 at 11:59 pm
So sorry for all that you are going through. has there been any improvement, any decline? If decline, have they considered additional ivig? There is hope at the end of the tunnel, it has been 22 months and Kevie is so much better, and Julie too had good news today, no ivig reaction. So keep the faith, catch up on some reading if you are able and remember, everyone here sends good thoughts and prayers your way!
Dawn Kevies mom
AnonymousJuly 19, 2008 at 5:50 pm
I have to say I am SHOCKED and appalled you all have been diagnosed with conversion disorder. I have a masters degree and am studying for board–like tests to become licensed in clinical social work–that all means I have training in mental health diagnoses and am qualified to diagnosis non-medical diagnosis (including conversion disorder) in practice. Anyway, from my studies I’ve learned conversion disorder is quite rare — way more rare that GBS, that’s for sure! I feel so lucky my neuro knew immediately what I was going through, even though the progression had been long before I saw her (regular doc didn’t have a clue what was up and I had to keep asking for tests). Here’s the thing, when you can, get a letter or something for your files stating clearly that your symptoms are not a result of conversion disorder. A neuro or psychiatrist can do this anytime, or a qualified, competent mental health clinician (LCSW, MFT, PsyD, etc) can do this for you based on medical records. Sometimes, those mental health professionals can be great advocates for you as well, in arguing against incorrect diagnoses as you are going through the process and recovery from GBS/CIDP. Good luck in your testing and finding more competent care providers. Foxflower
AnonymousJuly 19, 2008 at 5:54 pm
Oh, by the way, out in VA a what is an LCSW here would likely be an ACSW there. CA’s terms are different and testing/training rigorous. If you find an ACSW who’s been licensed in CA (at least in the last few years), you’ll find someone who’s at least familiar with the diagnostic criteria for Conversion Disorder, and how rare it truly is.
AnonymousJuly 19, 2008 at 8:25 pm
[COLOR=black]I read recently that the prevalence of conversion disorder is about 20 per 100000 in the US. While I don’t know how good this number is (what is the number you have been told?), we do know that the incidence rate of GBS is 1 to 2 per 100000. [/COLOR]
[COLOR=black]One thing that I have noticed it that some people will not go to a mental health professional (MHP) when referred. I’ve never understood why. It is something like this (admittedly inaccurate) scenario: a patient presents with generalized weakness. Without blood tests, the general practitioner says that hypothyroidism is causing it. S/He offers a referral to a neurologist, though. However, our patient refuses to go and nothing gets better. How is that much different from a neurologist diagnosing conversion disorder (without the tests/evaluation an MHP would do), offer an MHP referral, but the patient refusing to go? Without a diagnosis from somebody qualified to make it, conversion disorder cannot be ruled out. As you said, the MHP can put a letter in one’s file stating that one does not have conversion disorder, but not if one has not been examined.[/COLOR]
AnonymousJuly 21, 2008 at 9:36 pm
MarkEns, You’re right. You can’t get an accurate diagnosis if you don’t go. That’s why those who do their research, like you, on conversion disorder, and see they don’t meet the criteria or just know something else is going on, need to advocate for themselves and find someone who will discover what is causing the weakness etc. Diagnoses for GBS can be varified medically, and it’s more difficult for conversion disorder, of course. I haven’t see the number you have on conversion disorder. I may be wrong about it being way more rare that GBS. Thank you for noting my exaggeration. The numbers are interesting and it’s also interesting that the people who’ve posted here have been diagnosed with it when confirmation later says it’s GBS. So, of the 20 in 100000 how many were misdiagnosed? Looks like the number might drop if you took out the GBSers. I guess the same can be asked about numbers on GBS. What remains true is, if a person believes they have been misdiagnosed with any mental health disorder, there are actions they can take to have corrections added to their records. The idea fellow GBSers living with the stress of believing they’ve been misdiagnosed with no corrections to records bothers me on their behalf, especially because the extra stress isn’t necessary. Just as with GBS, advocate for yourselves. And by George people, visit your friendly MH clinician despite possible stigmatization. Most are nice people who will be interested in you and your best interests. MarkEns, I hope I addressed your thoughts.
AnonymousJuly 21, 2008 at 10:23 pm
The numbers peaked my interest. I better know this stuff for practice and for the test. I wouldn’t like to be the one to misdiagnose it. The numbers I found, and as stated in the DSM-IV-TR, are from 11/100,000 to 500/100,000. Pretty variable huh? So, current research indicates it is probably more common than GBS, not more rare as I thought before. The DSM also states that the diagnosis should be revisited periodically because of possible medical causes of symptoms. So, the diagnostic criteria manual encourages re-evaluation of the diagnosis in case corrections are needed. Keep this in mind when you advocate for yourselves everyone. If you have medical tests showing other causes of your symptoms, or any that rule out coversion disorder (there are some according to the DSM), you CAN have corrections made to your record. If anyone wants to see this information for themselves, google conversion disorder, and some sites will show the actual Diagnotic and Statistical Manual, Revised, TR (DSM-IV-TR) pages on conversion disorder with all the extra helps. I hope this improved information helps someone out there besides me.;)
AnonymousJuly 26, 2008 at 2:18 am
[COLOR=black]I talked with my neurologist about conversion disorder yesterday. He said two things that I found particularly interesting. One, if the symptoms are largely about pain, he would be very unlikely to suggest conversion disorder. Two, conversion disorder seems to have fads, for lack of a better word, in its presentation. In the 50’s and 60’s, conversion disorder often manifested as blindness. It was called hysterical blindness. My neurologist tells me now that it tends to manifest as pseudo-seizures or as various gait disorders.[/COLOR]
[COLOR=black]You did get my point, and thanks for expressing it in a different way.[/COLOR]
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