Hey there Tinners! I have Conversion Disorder and it's not too rare I don't think. It's just not talked about much which I wish that weren't the case. It'd be nice to have more info on it. Anyways...can I ask what kind of symptoms you are experiencing? All I can say is if you don't feel conversion disorder is the right diagnosis then I suggest making sure you have all the tests done that you can. I had MRIs, EEG, CAT Scans, and saw a neurologist and couple of movement disorder specialists before I was sure of my diagnosis. All the tests came back normal and the movement disorder specialists called it right off the bat. They were right about the conversion disorder but only one of them was nice enough to act like I wasn't a waste of time and actually sat and talked with me so I had a clearer understanding. If you do have conversion disorder you don't necessarily have to have a trauma that is current. I had a hard time accepting conversion disorder as a diagnosis because to myself I thought I was happy. It took some time and therapy for me to discover what my main issues were. Now that I know things are getting a lot better. I still have "attacks" of symptoms every now and then but it doesn't interfere much at all. I hope this helps you out some. You can write me anytime if you have any questions or just need someone to talk to. If you feel your neurologist isn't listening you can always get a second opinion.
Here are my symptoms:
Lower right abdominal pain
Deep pain in right arm and leg
Occasional numbness/tingling in legs and sometimes arms
Hallucinations (dots, squares, flashes)
Extremely sore spot in the back of my head w/out any trauma or bruise
Short Term Memory Loss (it has been progressive and not to mention extremely annoying)
Excessive sweating when just sitting down relaxing or talking
Lightheadedness (currently daily) occurs even when sitting
Constant Craving for salty foods
Constant thirst (probably because of the salty food :-)
Slurred speech and lack of grammar (which I was once very good at)
-Thats all I can think of for now
I just turned 13 and this is the whole story. Sorry it's probably boring and very long.
For a few days in the beginning of October 2008 I felt like I was coming down with the stomach bug. I had a stomach ache, headache fatigue and slight fever (99 degrees). By the third day the stomach ache had gotten worse. The fourth day it was really bad and the pain was mainly toward my lower right side and it was a bit harder to walk. So I was brought to the hospital. All the doctors thought it was definitely appendicitis until they saw the completely normal x-ray and CT scan. And my white blood cell count was also normal.
About 3 days later I was lying down about to go to sleep when I had this horrendous pain in my right side (the same place as before) and I burst into tears. As I went to jump out of bed, my left leg moved, but my right leg was stuck. I couldn't lift it, it just didn't respond and could barely move it. I felt numb and tingly and of course pain. I went to the same hospital and the same exact thing happened. Same test results and everything. Though this time they did an ultra-sound to check my ovaries or whatever. Normal.
They sent me home with crutches and that was it. It was pretty much the ending of normalcy.
I went to a second bone doctor (I had another due to tendonitis and carpal tunnel from a month ago). He suggested to test for lyme disease. And if that was negative to go to an abdominal surgeon. It turned out positive (I heard that the first test is unreliable and if positive could actually mean you have an autoimmune disease). So they took the second test for lyme (western blot) which was negative.
I was given doxycycline for 2 weeks. It did not improve my condition even though I had hoped it would. My doctors assured me that it was not lyme disease.
Next I went to a infectious disease doctor who did the DNA test for lyme disease which he said was very reliable and it was negative. He also tested for mono and other sorts of infectious diseases. All normal.
By this point I had not gone to school except for a week in October after I had gotten my crutches.
After that I saw an opthamologist because of my hallucinations and she said physically my eye was fine. I went back a few weeks later and she said the same thing and told me to get an MRI.
I got the MRI (which was very painful because of that stupid sore spot on the back of my head).
The radiologist said it was within normal limits.
I went to a pediatric neurologist who agreed that my MRI was normal. He examined me and said that I had hyperreflexia but everything else was normal. I had never had hyperreflexia before because of all the times my reflexes have been tested (which has been alot) my doctors all said, "Your reflexes are normal, not to fast, not too slow"
And then he came up with the idea of conversion disorder. He told me it was just his guess and that I should get a nerve conduction test which is also called an Evoked Potential I think.
I'm getting that in Feburary.
In addition to all of this I have lost my memory, my spelling, my grammar, which before all this happened I was good at. I'm doing worse in school ( i don't actually go to school I have 3 tutors) and it is hard just to think. I really want to be normal and just walk! Conversion disorder is when you cause symptoms subconciously, so it isn't in your control. But still, I want to walk, I want to go to school and I want to be like an average person my age. I havent walked in almost 3 months but it feels alot more like 3 years. Sorry I'm ranting, but I would do anything to get better. Anything.
I will be going to a second neurologist, an endocrinologist (my mom thinks its Addisons which I completely disaggree with because it doesn't fit, and it's VERY rare) and finally a Lyme Disease specialist because I am desperate and just hoping it is lyme disease because I know that they can fix that.
Thank you so much for replying! Also what kind of treatment plan do you follow?
Hey Tinners! Thanks very much for the info! I would highly suggest that if the second neurologist suggests conversion disorder that you see a movement disorder specialist. I had trouble with walking for about a year or two and the movement disorder specialist was able to confirm that it was conversion disorder. I had seen a couple of regular neurologists and they had given me different diagnosis...one was Post Concussion Syndrome and the other was Generalized Dystonia. So both of the neurologists were wrong..so I do definitely recommend a movement disorder specialist since this is more in their line of work. I am very glad that you are having a lot of tests done. Believe me I know it's frustrating but really you can't accept a diagnosis of conversion disorder until everything else has been ruled out. With the symptoms that you have mentioned did they all come at once or are your symptoms growing and changing? Like does one symptom leave and then a completely different one develops? For me I started out with one eye that had muscle spasms if a certain point on my head was touched....that then grew into being at times my face would feel tingly and then a couple of weeks later I didn't have tingling in my face but my arms felt odd and so forth. So anytime I had an "attack" I'd have old symptoms along with a newer symptom. I had a lot of trouble with my symptoms and was tired all the time so much so that I had to quit work. But since my symptoms kept changing and evolving I wondered if it could be a medical problem because it just seemed odd for it to always change. That's just how it was for me.
As far as my treatment plan...I finally started doing better when I was place on an anti-anxiety drug called Buspar. It didn't take all my symptoms away but I started being able to walk better and had less symptoms. Currently I just take Wellbutrin and go to therapy regularly. It took me a long time to finally realize what had been bugging me. I suppressed my emotions all my life and I was in a bad marriage but kept telling myself I was happy so I had no idea that I was really upset. Once away from my then husband I started doing better and only through therapy and accepting my emotions and what happened have I been able to greatly reduce the conversion disorder. Sometimes I still have attacks but it's more like just once a month now so I'm still working on having a complete handle on it.
Just take care of yourself and look for your answers. Did you ever get a follow up about the autoimmune thing? I believe you said you tested positive but it was a false positive for Lyme Disease and sometimes that might indicate an autoimmune disease correct? Did you ever get checked for an autoimmune disease? Just make sure you get any tests that you can get that might explain your symptoms. Once you've exhausted those and come out with everything normal then you can start focusing on it being conversion disorder. Maybe during this frustrating time therapy wouldn't be a bad idea anyways. If you do get a therapist make sure it's someone you can talk to, trust and feel comfortable with. I've always had a hard time with therapy because I could always trick them into thinking that I was fine and happy. I've done well with therapy now since I have a therapist who I trust and I was completely honest with her and she knows to ask me direct questions and to keep me on track. :)
Well I think I've probably said enough now! Lol...I can go on and on! Anyways never hesitate to send me a message or anything like that if you need someone to talk to. I know this time is hard and frustrating just not knowing for sure what is going on with your body. You're in my prayers.
My symptoms do sort of change, but for the most part it is just that each symptom I had in beginning is either more noticable or just a bit different. For example in the beginning my hallucinations were these big dots and clouds and now they are for the most part small dots. Also, before I could limp for longer periods of time without any pain and now just limping a little bit makes my right side hurt even more. Also before it was mainly just my small joints that hurt, like my wrists and fingers, but now it's my knees my, shoulders, my ankles, even on my right leg, which I never use.
Yeah no doctor has thought to even test for any autoimmune diseases. They haven't checked my thyroid either. I'm hoping my endocrinologist will. The thing is since I'm home all day I look diseases and stuff up and I haven't quite found one that I said "Yes that is definitely it." I don't know if that means I have conversion disorder, something rare, or that I'm not looking in the right place. I've found a lot of diseases that match my leg thing and my weakness and a few other symptoms, but then it doesn't have any hallucinations.
Though at this point I'm glad I had an MRI because other wise I'd be very worried about having a brain tumor. Or Multiple Sclerosis. But the neurologist said I definitely don't have either of those which is good.
I read in a book that their are like over a hundred autoimmune disorders, but it talked about the main ones. I'll look it up, I have nothing else to do all day.
Though another reason why conversion disorder does kind of make sense is because my parents are divorced (which never seemed like a big deal) and I used to live my mom, her third husband(mike), my whole sister (heather) and all my half siblings. Now I live with my dad, his fiance (I don't hate her but I don't love her either), heather and my dad's fiance's son who only comes home when he isn't at college.
I suppose you could say I have bad luck in the parent department because my mom is the whole reason we all moved out. She started out living with mike and their kids in a apartment (there is three kids that are their's). But that didn't work out and now they are in the middle of a divorce, which I understand because that man is gross to say the least. Not to mention she didn't exactly deserve an award for good parenting skills. But I don't want to get into that.
I told the neurologist about my family and that is why I'm guessing he said "Conversion Disorder." To me it seemed like a last minute guess because he had no idea what else it could be and didn't really care.
My dad hes a good parent. And he is still convinced it is Lyme Disease. I can't even mention the word(s) or he'll go on ranting about it likethere is no tomorrow.
Yeah I'm seeing a movement disorder specialist soon also,my neurologist recommended him, so I am assuming that is what he is. I know that I'm not a doctor so I'm not going to deny treatment if I don't think I have something, so I'll try it and hope it works. They are not going to hypnotize me though, because that is what my dad wants them to do and he was all excited (he's an odd man) and it sounds weird but I do not want anyone watching me while I'm hyponotized (if they even do that) except a doctor, because it is just weird.
My neurologist mentioned that I would need like Congnitive something therapy, which sounds like a load of **** to me. "I'm going to heal myself?!" If such was possible I think I would have fixed myself by now, I really would love to walk but I haven't been able to, I try all the time, I relax I walk slowly, but it just doesn't work. I feel like that neurologist was very condesending (sorry can't spell anymore) and he really just acted like I was faking everything. Whenever I would tell him a symptom that was weird (like that sore spot on the back of my head) he'd just give me this look.
It is the spot that I hit my head on a branch and the ground when I fell out of a tree actually, but why would it hurt now? Its been like 2 years. Well I don't know. Several people have actually said I should go to therapy anyway, which is kind of odd, it's just I've never been a fan of them. I am weird in nature, and I have OCD, but don't think a therapist is going to fix that.
Thanks again for all your help!
Oh man Tinners I can see a lot of me in you on this whole thing. Yes I know that if you could heal yourself you would. That's what I thought the entire time I had problems with walking and other stuff. Conversion disorder, if you have it, just rules your life until you are able to find the answer of what is wrong. And that is a very very hard thing. I mean it took me 4 years to finally figure it out and yet I still have little bits of conversion disorder every now and then but so much more manageable now. I am glad that you are going to see a movement disorder specialist. It'll be good to get their opinion but do brace yourself. I had three movement disorder specialists and two of them acted like I was just a young crazy woman who was taking up their precious time when they could be dealing with real patients. The last one I went to actually sat down with me and talked with me for the whole hour to discuss what Conversion Disorder is and what treatments there are and that he would still be around and be part of the team. He also got right on the phone and scheduled an appointment for me with the psychiatrist he trusted most in these matters. So that made a huge difference...plus the fact that I had been through a number of tests and everything was negative. I was finally able to accept the fact that it was conversion disorder. It's very hard to accept that diagnosis though. Because then it feels like you must be crazy or something and I felt ashamed that I had made my parents worry over nothing...but I've learned to not think about that as much because really you can't help the conversion disorder symptoms.
As far as hypnotism goes...lol someone suggested that I do that before too...I think it was a therapist even but she said it would never work on me because I don't trust people and you have to have a lot of trust to let yourself be hypnotized. I don't think you'd be a good candidate for it either since you don't want to do it. I can't blame you on that...I'd be afraid of what I would say and yeah I just can't put that much trust into a person I don't even know!
As far as the spot hurting where you had been hit in the head...well I was hit in the head by many things during my life but when the conversion disorder started up I had been hit in the head by a falling partition. It didn't knock me out or anything but I did feel kinda funny that day. So that's pretty much where the conversion disorder stuff generates from. I get a funny feeling in my head sometimes and I know I'm more suseptible to having an attack when I feel that weird sensation. Anywho I'm at work and we're about to close so I'll try to write more to you soon! Take care!
Hey again Tinners! I hope you are having a better day today. I did look up on the Mayo Clinic site to see what they had to say about Conversion Disorder and one of the symptoms they had listed there was hallucinations. So I don't know if that helps you out some or not. Conversion Disorder is just very vast in the way it expresses itself. With me my symptoms are just all over the place. My hand will do some weird twisty movements and poses and then sometimes it will just shake around. I then sometimes repeat vowel sounds, cuss words or odd phrases over and over again. Other times it's just harder to talk and it's like my mind slows down so it takes me awhile to get out the sentence I want to say. I also will have problems with walking sometimes during an attack. It's like my whole body starts giving out and I fall on the floor and sometimes I just stay there until my head starts feeling right again because if I try and get right back up I usually just fall back to the floor again. It's just a really strange thing and pretty embarrassing when it happens out in public. Since I've been doing better lately it usually is contained to just being at home and I usually just shut myself in my room until it's over and then sleep. It gets pretty exhausting when it does happen.
I think you are definitely on the right track with making sure you get what tests you can get done. Conversion Disorder is pretty much a diagnosis given when nothing else can medically explain what is going on with your body. That is why it's so important to get all the tests you can. Some people are labeled with Conversion Disorder and then later find out they did have a medical diagnosis that was overlooked. Also if you have any doubt about a test that you think you should've gotten and you didn't then you will always wonder if maybe that is the reason for your symptoms and won't be able to fully accept the Conversion Disorder diagnosis. It's very important to have a clear mind and be able to accept the diagnosis. At least that's what I've found to be true for me.
Just take care and I know it's all very frustrating right now but just keep on with the tests and let me know how it's all going. Message me anytime if you need someone to talk to.
What is an attack? How long does it last? Is it like a panic attack?
I am supposed to be joining this 5-0-4 program or whatever for school, I don't know if you know what it is so I'll tell you anyway. It's a program for kids with temporary disabilities, illnesses or whatever so I have to go to school for probably half the day. And they can exempt me from gym until I'm better. The thing is going all around the school on crutches is ridiculously exhausting, it's hard enough going around my house and I hate being all sweaty at school (doesn't everyone) so I'm going to get a wheel chair for school.
Being in a wheel chair for half the day is going to cause everyone to ask all kinds of questions and I hate being judged and watched, (i'm a paranoid person i guess) so I'm not looking forward to it, plus believe it or not I hate getting attention. Like at my birthday when everyone was looking at me and watching me, ugh it was just weird I don't like it. Though it is better than having tutors. When you have attacks and its hard to walk do you use crutches or anything like that?
Also I don't want to tell people i have conversion disorder until I'm positive, so I'm going to have to tell people "I'm not sure yet" which causes everyone to think I am faking it. Very annoying.
Sorry I am ranting. Write back soon!
Oh man Tinners...I must apologize for not writing sooner. I actually did write sooner but I guess I forgot to click on the Post Comment bar! Grrrrr....so I am very sorry about that. Now to remember what I wrote and didn't post! :)
Anyways...well for "attacks" they can last anywhere from a 1/2 hour to a week or so for me. When they go for a week I have periods where it doesn't effect me but that's only when I'm lying down and don't try to do anything else lol. These days attacks usually last just 1/2 hour to maybe 12 hours and I only average one a month. So that's not bad at all, seeming how it used to affect me every day for awhile there. And the "attack" is nothing like a panic attack...I have no fear of dying or feel of dread at all. I just feel embarrassed and usually am alone. If I feel it coming on then I go to my room. I hate having it act out in front of others. It's just uncomfortable. My family is pretty cool about it though. They ask me if I'm okay and they pretty much figure out what is going on. If I feel I need something to drink they help me get it if my body isn't cooperating at the moment. Then they just act like everything is normal which is cool.
As for the 5-0-4 program...I think that's great that you are in there. I hope it helps you! I know it ***** to have to use a wheelchair and crutches. I had a cane that I walked around with for awhile and people would just stare at me or tell me they hoped my leg healed soon....(lol they just assumed since I was young I must have a broken leg or something). But you have to do what you have to do. I used a wheelchair at the mall to get around since just walking a small distance wore my body out quickly when my conversion disorder was real bad.
As for what to say to people if they ask. Well you can just say you have a "movement disorder". It's too early to say Conversion Disorder since right now you're still trying to find out what it is you have. Plus hardly anyone knows what Conversion Disorder is! So save yourself that grief for now and most people understand movement disorder. It makes sense...you have a disorder with your movement so you need to use a wheelchair.
So there ya go. I know things must look kind of down for you now but just know there is hope out there and I'm sure you are one awesome girl. It's pretty easy to feel depressed when you don't know what is going on or what your diagnosis is. The answer will come, even though it sometimes takes awhile. It's always best to be thorough in finding the correct diagnosis. :) Take care and talk to you again soon!
Yeah that does sound easier to say, I have a movement disorder. I won't be going back to school until.. probably like the 26th of January because my dad has this business trip and blah blah blah.
He got really mad at me because I told him that going to school on crutches was not an option ( I already tried this for like a week in October) and that I would really appreciate a wheelchair, plus we have new insurance which covers 70% of the cost, but of course no one actually listens to Katie. Anyway, but my stepmom was more understanding of this and we actually found out that one of my tutors (which is one of my friend's moms) has an available wheelchair. So hopefully I will be using that.
So, my stepmom is supposed to be making the appointment today with my movement disorder specialist, I guess they have been playing phone tag for the past few days.
Well I don't know if this interests you but my memory is getting worse, at least in my opinion. I'll be talking to someone and I end up repeating exactly what I said a matter of minutes ago and I won't realize I'm doing it until they tell me "I know you just told me"
I feel like an old man. Old men don't go to school, they have trouble walking sometimes, they can have trouble with memory, they can have aches and pains. Kind of like me.
Do you have problems with memory? And is it one specific leg that bothers you during these attacks or does it switch? Not to be all nosy, just wondering.
It used to be really just the joints in my whole body would hurt (including the ones in my right leg, the bad one) and of course my right hip area. But now it seems to have spread so now it is my whole right leg. When it randomly starts hurting any movement or someone touching it will hurt really bad. And it will get all weird and feel like it's buzzing.
Thanks for listening! Talk to you later.
Hey Tinners! Man, I must be losing my mind! Once again I know I had written you back on here but it's not showing! I think I even clicked on the post button! This is getting crazy. So once again I am so sorry!!!
Well I'm glad that you were able to find a wheelchair for free! I got one from some recycle, reuse program and I was able to give it back to that program when I didn't need it any more. :) Sounds like your stepmom is very supportive! That's great to hear! I'm sure your dad loves you and means to be supportive but he just might not know how to express that as well.
As far as my memory...well that's a hard thing to judge. I know that sometimes I ask a question to someone and I'm listening and everything but once they say the answer I completely forget what they said and I have to ask again. Other times I'll be in mid-sentence and completely forget what I'm talking about and that's embarrassing sometimes but lol my friends will either tell me what I was talking about or they forget too! Hmmm which I guess that means they weren't paying attention but then again I think maybe they are just as lost as I am in memory sometimes! I know there are a lot of things I don't remember about high school and stuff like that but then I wonder if that's just because I'm getting older. Some of my friends remember a lot more about it than I do.
So yes maybe I have memory problems but I'm just not sure. As for my legs...they are usually both involved during an attack. They both will just kind of slump around or they will go into crazy patterns. Yesterday I had an attack and I had to hold onto the counter while in the kitchen to keep myself up because my legs felt like they were having trouble staying up. It didn't last too long and then of course they changed to where my feet were just angled out and I was walking upstairs like a penguin or something lol. It's just strange at how random it all is.
I'm glad you'll be getting an appointment with a movement disorder specialist soon! I hope you will be able to learn something more about what is going on with you there. Take care and let me know when you get your appointment set up! I'll talk to you again soon....even sooner if I see that this hasn't posted either!
That's weird how they don't post..well if it takes you a little longer than usual I'll assume it's the computer being weird.
My official appointment is on Monday, January 26th for the movement disorder specialist. So if they give me medicine, I'll have to go to therapy too? I think my neurologist mentioned something like cognitive behavior therapy, like where you are supposed learn how change your body temperature and then eventually "heal yourself" which I'm sure will take forever if it even works, so I'm very skeptical on that. I wish I had something they could just give me a shot once in a while and be done with it.
Not to mention if this isn't what I have then we'd be wasting a bunch of time on that, I just think that it is too early to be sure it's one thing. For all they know I could have a vitamin B12 deficiency, but I don't think any doctors have checked for something simple like that. I'm getting a new primary care doctor and I'm seeing him on the 27th so I'm hoping he'll have some ideas too.
Talk to you later (I hope it posts)
Well if it is conversion disorder, yes, you will need therapy. The whole thing of conversion disorder is that your mind is struggling with some conflict or emotion that is not being dealt with emotionally but instead being dealt with through the physical symptoms. I don't know that Cognitive Behavior Therapy teaches you to change your body temperature and heal yourself. I think it teaches you to look at behaviors you don't want and learn new ways to cope with things.
Cognitive Behavior Therapy didn't really work with me because I felt like I was getting nowhere and I wanted to understand everything. You can't understand everything with Conversion Disorder, but through therapy and self reflection eventually you can see what the problem is. This probably sounds confusing and all. I was sure I didn't have Conversion Disorder because dang it I was happy. I was happy with my marriage and with my job and then everything started going bad once I got hit in the head. It wasn't until I decided to come out to Cleveland that I was really able to focus on what was bothering me. My aunts pushed me to talk about things and I slowly came to realize that I really wasn't happy in my marriage. That I had put questionable things he did into the back of my head because whenever I asked him about those things he would act like I was dumb and that I was horrible for bringing those things up.
I started doing better but still had a lot of attacks. Recently I've let myself accept that I wasn't happy and accept that I had to get a divorce since he was very deceitful and that didn't make me a bad person for having to leave. I also started trying to look at things in a positive way. That really helped. It's real hard for me to be positive because my brain automatically looks for the negative in things especially when it comes to myself. I've had bad self esteem and that's probably what got me roped into a bad marriage in the first place. I'm working on the self esteem thing and it's helping. I still have attacks from conversion disorder but they tend to pop up more when I think or hear some news about my ex or my ex-in-laws. I'm learning I have to keep distance from them because they cause me a lot of anxiety.
I don't know if you have Conversion Disorder or not. It's only something that you can be diagnosed with by a professional and after you've had tests that are negative for any medical reasons for having the symptoms you have. Talk to the new primary doctor about taking the vitamin B12 deficiency test and see if you can get one. You really have to have a clear mind about knowing that you've done all that you can do to find out what is going on. Once you know it's definitely nothing medical can you even begin to accept that it's psychological.
I think the hardest thing for me to accept on it being psychological was that it felt like it was all my fault then. That I had put my family through so much grief and worry and then it turned out to be something psychological. But I had to remind myself that it wasn't my fault and I didn't make myself have these symptoms and in no way would I have done all this to myself. It's just a very confusing disorder to have. I'm hoping one day it will all completely go away but it's going to take some work from me to try and acknowledge my feelings and stuff.
I know you wanted to read all that so there you go. I'm just hoping in some way that helps you. I don't think therapy is a bad idea anyways. Even if it isn't Conversion Disorder...all of the changes you are going through with your body and having to use a wheelchair must be frustrating. It might be good to have someone to talk to about that just to keep some of the stress down. If you don't believe in therapy though or self reflection then it won't work. For me therapy works because I have someone to talk to and she can ask me questions and make me really think about the way I react to things or reflect on how things make me feel. I tend to talk more about actions then about how I feel on things. I think it helps just to have someone there who can call me out on stuff.
Believe me I hear you on just wishing I could get a shot that would take care of everything. That would be so much easier! Okay I'm sure I've written more than enough now! You're probably thinking "gah won't she ever shut up?!" :) So I'm done now! Take care and I hope you are able to get some answers when you are at the doctors! Let me know how it goes!
PS...I finally figured out why it didn't post those other times! Lol I just click to look at this thread right from my email and forget to log in!!