Q&A on Dissociative Motor Disorder

I am very aware there is very little info around about this condition, and as i have been living with this dx since 2008 I am open to answer any questions about it that i can either from a personal level or a factual one from my research.

to start things off....

what is it called? Dissociative motor disorder (DMD), in the US it is classed with conversion disorder (CD), i have heard of it being classed as functual neurological disorder (FND) too. I have DMD as my dx.

where is it classified DMD is classified by the World health authority number F44.4

What causes it? it was explained to me as being 'emotions from my past that i was unable or not allowed to process in the right way now surfacing in a physical way'

my background I was emotionally and sexually abused for over 10 years as a child/teen, mum decided to let the man stay in the family home because she did not want to grow old alone even though she knew what he was doing to me (she blocked it out and denied it). I moved 200 miles away at 19 to start a life without family ties but every week mother would still phone to tell me her life including what my abuser was up to! a few years later i met my partner, and gained the confidence to cut all ties with the family. my partner died of fibrosing alveoilitis and heart disease after a 10 year struggle with only me as his carer, at the same time i was working as a childrens nanny and was running and working in my own 36 place pre-school nursery and caring for an elderly friend, so was physically and emotionally exhausted.

how it started for years i blamed arthritis for my hurting legs as i had been dxd with it in my knee years earlier and it runs through the family. but gradually i began getting very tired, put it down to all the work i was doing and the stress of caring for a dying man- the love of my life.my doc said 'what do you expect' I picked up a bit after his death, but was a bit depressed, not to the point of being unable to function, but to the point i cried very easily and for hours at night, my patience was being tested by the childern at nursery..not me at all as i was the most patient person ever! gradually my hands started hurting and eventually the children could manipulate the toys easier than me! my doc just laughted and shrugged it off. then my asthma quadrupled in severity, my sphincter control got worse, and my legs were still getting worse to the point i could not stand still for the pain. i began struggling to function at all after lunch, needing to stay seated and eventually needing to lie down/sleep for 1.5 hours after a light lunch. i closed nursery and took a break from work hoping to rest up and get better, but things deteriorated even more to the point i was housebound, struggling to walk at all, my brain and legs/arms/hands began to not talk to each other, so i would go to pick something up and my hand would not move or i'd stand but one leg or both would not straighten, doc refused to come out to see me. 18 months later i took an overdose of rat poison as i could see no way out of this. i was relying on one friend to come every 6-8 weeks to go shopping for me, she came picked up the list, went came back put the shopping in the hallway and went. that was the sum total of my human contact for the whole 18 months! i was taken to a mental health unit and that is where they dxd me. funny thing is i felt far better having taken the poison than i had in months even before they took me in!

how is it diagnosed there is no real test or examination that proves it, I was diagnosed through observation in hospital, i since had MRI and CT scans to rule out other physical dx's. although it presents the problems associated with MS/Stroke etc, the scans don't they come back ok!

what is the usual course of it usually it comes suddenly and goes within a few months if treated correctly, though some cases can last over a year, in these instances it never fully goes and some experience the full effect for life.

what is the recognised treatment
it is recommended that long term inpatient care is required where OT, physio, psychological therapies and nursing care can be given intensively, if this is provided there is a greater chance of full recovery.
it is recognised that a person with DMD will in most cases be unable to recover fully by remaining in the community care system.(not inpatient)
the above listed treatments/therapies must be given at the same time to be effective, giving them one after another will not help recovery.

How it progresses without the correct treatment
This will be dependent on what parts of the body are affected,
for me personally i gradually lost the ability to walk, needing to hold/lean on the walls to get around the house, falling more often, until my legs unable to bear my weight and i fell as soon as i stood up. they still have full flexibility if moved manually by hand but are begining to get stiff now. my hands get very achy, there is presently a second or two delay in wanting to grip/release my fingers and it happening, my fingers feel stiff though they still have full if slow movement. my grip is weak, my arms are unable to wheel my wheelchair over even tiny cracks in the pavement. i found it painful to sit upright for long for a few years before dx, till now where i can only sit up with support of a five point body harness. Without it I have to sit in the yoga position where the soles of my feet are together and my knees are out to the sides and then use both hands to stop me flopping forward or to the side.(ability of a 3-6 month old). my hand/eye co-ordination varies from minute to minute, sometimes with full concentration i can pick a cup up first time , but more often i miss the cup completely and have to readjust my aim to get it!(past pointing). My internal muscles are deteriorating too, i am fully and perminently incontinent of urine, i can sometimes hold feaces for about a minute but definitely no longer and often not at all, so it won't be long before this becomes full and perminent too. I have a lot of trouble with digesting food, constant acid reflux (even with antacids) my lung capacity is quater of what a healthy persons my age should be. my heartbeat is high, blood pressure ok.
mentally i am far less patient than i used to be, i get frustrated easily, i go through phases of being stressed out&exhausted&crying lots, ok with everything&happy to help anyone and phases of just wanting to curl up and hibernate away from everyone unable to do anything except eat and lay in bed. my arms and body spasm for a good hour on waking up and when tired, during this time i am unable to focus or form words though my brain still want's to communicate and is thinking clearly throughout.this severely impacts on my sleep because being unable to turn myself over in my sleep means i wake up two or three times a night, spasm for an hour turn over then go back to sleep!(i take temazapam once a month so i get a full night of undisturbed sleep when i am really exhausted!) I am still very sharp intellectually though reading and writing is now very difficult, i was very good before, but now I struggle with simple words and give up after a sentence because my brain and eyes hurt big time! (i am using read and write gold to type this from my speach) my math is still very sharp and i can out do my PA when calculating her pay, and she uses a calculator! i think i have covered how i am in full, but may have missed something. i am too tired now to check so will do tomorrow.

please feel free to ask any questions you want about this dx and i will do my best to answer them x

Life has certainly dealt you some hard blows. Whatever happened to their offer of sending over a couple of Ts? Wasn't that you? Cuz if it's conversion disorder, I don't see any way out of it except therapy. That's what I'm dealing with with my hoarding. I have read everything available on the subject and that's the bottom line. I make small bits of progress and try not to be surprised every 6 months when the apartment maintenance people come in to convert the heating-air conditioning unit. Thank you for sharing how your condition progressed. I know I would be much worse off if my T didn't force me to leave the house to see him.

very informative thanks so much yellowted.

the two Ts are coming on the 24th, they are apparently not coming to help me get better or to sort out my past, it's accepted that can't be done in the community, but are coming in to support me through the stresses i have now... i am having to project manage adapting my house myself, am really struggling with the deterioration in my ability, struggling to cope at home and find/employ a new PA(carer) since mine went AWAL at Christmas, I am a director of a charity, we just lost a tender for delivering the personalisation agenda to the borough which we have been delivering for the past 6 years so are going through a difficult tupe with most of the staff and having to rethink our future services and to top it all the local busses have changed their criteria for which mobility scooters are allowed to travel on them so mine is no longer allowed so i now am restricted to scootering everywhere unless the train stations are accessible, so an outing which used to involve two busses (30 minutes and 1 bus each way) now involves 4 trains and two twenty minute scooter drives and takes 3 hours! and i was petty emotional the last couple of times I saw my S/W so she thought it would be helpful for me to have some one to talk to about all this because i have no family or close friends to support me.
I love going out, partly because i had 18months at home alone seing 1 person every 6-8 weeks to get me shopping and partly i find it easier to move around outside as my house is not adapted to my needs yet.
small bits of progress is a start so well done for starting to make progress x Take care x

Is it helpful to ask for a diagnosis?

there is no specific test for this, it is a matter of illimination of known dx's which exhibit the same symptoms which a dx is supposedly based on though mine was given before the necessary tests to illiminate other things were carried out!

it would be helpful to have a dx though if your symptoms have just begun as this should give you a good chance of recovery because treatment should be talking therapy and physio therapy running paralell for many months starting very soon after onset of symptoms, if symptoms last over a year then chances of full recovery are greatly diminished.

I have found my diagnosis has made getting the help and support i need extremely difficult and in some cases impossible to get. because it is classed as a mentel health condition i am being treated under the mental health team who have very little knowledge or resources to treat the physical difficulties associated to this condition and the physical teams will not take me on as i do not have a recognised physical condition just the physical symptoms of a mental health condition! so where others who have lesser mobility diofficulties than myself have been supplied with electric wheelchairs and had their homes adapted before they leave the rehabilitation centre I have had to buy my own mobility scooter (i can't afford an electric wheelchair), had no rehab to help me adjust, and have been fighting for four years to get my home adapted and have to pay for most of it myself when it is eventually done!

yellowted have you done any DID therapy. I became aware a few weeks ago that I was having emotional flash backs. I have had them for ever. I never knew why I would suddenly be overwhelmed with feelings of sadness or anger or fear. I now also realize that I have painful body memories. I used to think there was something wrong with me physically. I would go to the GYN or internal medicine doctor with complaints of pain in my back, legs and private area. Now that I am aware of my alters I am able to understand that when I feel a certain type of pain it means that a specific alter is present or close by. So I am interested in knowing if you have been to see a therapist and worked specificity on Dissociative Identity Disorder issues such as having alters?

I have not done any did therapy, It has not been offered to me as my dx is not did, over here treatment is very dx specific and I do not have insurance to go private as i was brought up to believe the national health service we pay for in our taxes would treat any illnesses we got.
i do not get flash backs or get upset about my past, i have rationalised all that has happened and know that the abuse was not my fault or doing and that it was simply my partners time to depart this earth, i did all i could for him, we had a great if difficult summer together, and i strongly believe he chose his time and was happy to go.
I rarely get angry and when i do there is always a justifiable present cause
although i do get upset and frustrated quite a lot my psychiatrist believes it is no more than anyone in my situation would be.
physically, my muscles are really deteriorating and my leg/core muscles couldn't hold me upright even if i were to try my hardest to make them, this is proven by proper tests, i do really past point etc, these are acknowledged by professionals, they are not simply in my mind. all of my difficulties are there all of the time, i do not lose time, and do not have alters to my knowledge. I am as far as i know am a whole, my psychiatrist would have flagged up if i wasn't i am sure.
I have listened to loads of the did threads on here and although i can understand did i can not relate much of it to me as a person. i do occasionally think i may have a little in me that never grew up, but when i listen to way the littles talk/type i dismiss the idea as my thoughts are always rational adult ones.

I am already in therapy for depression. I wonder if this diagnose will affect my future and just label me. I am going to see my doctor today, so should bring it up?

((((( yellowted )))))

I wonder if the little one you think is in you and never grew up is what is known as our "inner child". My inner child does not come out to speak to anyone nor does she really speak to me, it's more of an emotional communication between us. If there is ever word communication between me and my inner child it is me who is speaking to her. I can't say that I ever remember her speaking to me or how her voice might sound. I do however know what she sounds like when she is crying, which happens mostly when I have inadvertently ignored her and her emotions and needs.

Just a thought for you.

Thanks for the good introduction to the diagnosis.

I think it is one that most of "us" actually know very little about, so information is always good.

Sabby I think you are right, my little feels scared or sad when i have neglected her, but as soon as i acknowledge her she feels much better. like you mine does not talk to me, it is more feelings than speech, she gets scared/anxious and chews my finger till it hurts eventhough i can feel it hurting, i can't seem to stop the chewing until sh calms down or i swap my finger for a pacifier! (i keep a pacifier by my bed and whenever i feel she is begining to need attention i will chew it in the evening and she then is ok the next day...it saves my fingers!!!)

jimi It is my pleasure, i know there is little understanding/knowledge/information about it and thought it was time this was addressed and who better to address it than one who is living with it day in day out!

if you are recently dxd with DMD /conversion disorder then i strongly suggest you push for inpatient treatment as this is the only one recognised to work. it needs to start as soon after dx as is possible to have a good chance of recovery.

I have found that some doctors use the lable as a catch all, blaming every ailment i get on the dmd including a chest infection I had last year leaving it untreated for two weeks until i took myself to A&E (ER)! but for others it helps them for me to talk about how it affects me as they have not heard of it before so want to know more.

most of the time i am happy to meet any new healthcare workers or students to discuss my condition, though occasionally i feel like an experiment brought out from time to time to teach others, at which point i refuse! Luckily my social worker respects this, she does not push me to be probed and always asks the week before if i would mind a student sitting in.

I was diagnosed with conversion disorder in 2004. It has now been dorment for lack of ap better word for about 3 or 4 years now. Now we tbink i have an auto imune or neuromuscular disorder. But i had to recently switch primary care doctors as she thought anything i came in with was due to conversion disorder, even when my psych team did not agree! I was litterally starving to death... Anyway i have an awesome doctor now! And now what is left from the CD is psychogenic seizures. But i have epileptic ones too. So it gets confusing!

Impatient for conversion disorder? :-|

I was inpatient in a hospital acute rehab when i was diagnosed with conversion disorder. Had OT, PT, ST, and psycb therapy. I have gotten better psychologically but still have seizures though not as often can't walk without a special walker and not very far. And completley lost my swallow. Now i have muscle atrophy even though i have continued all therapies. So my docs think i have something physiological going on along with dx of history of conversion disorder.

yep Kittycat, I have been told that to have a goodchance of recovery from DMD Inpatient care should have been given as soon as i was dxd. they recommend inpatient care so you get physio, talking therapy, occupational therapy and nursing care running paralell intensively on a daily basis for many months. trying to cope with the disabilities connected to the condition and the therapies required for recovery whilst still having the normal day to day things of personal care, shopping, cooking, care of home and clothes etc is too much for the person to handle.
they tried community care with me, but after getting myself up and dressed and doing a one hour physio session in my home left me unable to get to bed or even cook a quick meal for supper I was so exhausted. also over here community care is restricted to once a week for 6 weeks rather than every day for many months!

great to hear you got the right treatment, without it you would have had less chance of recovering to the degree you have. muscle atrophy can be part of DMD/CD as it only takes a couple of weeks of not using a muscle for it to begin deteriorating, also using a walker, you probably put some of your weight through your arms rather than putting it all through your legs, so they are not working as hard and can deteriorate and get weak.
if you do have a physiological condition running alongside CD the physiological condition should show up on tests.

Yeah. I have been tested for MS. I am wanting to get tested for dysautonomia as my symptoms match that. I still have to treat every new *thing* i get as possibly conversion disorder related. It is tough because doctors SAY physiological and psychological are never seperate but most don't actually believe it!

I mostly use a wheelchair to get around and use the walker when i can. It is cpol. A special walker i can't fall out of as it is scary to fall from high up in a seizure. Hang in there and if you ever need to talk yellow, PM me.

thanks monarch, I am a 24/7 wheelchair user.. well unless i am in bed or on my mobility scooter! in the UK it is still very much you can have a physical dx OR a mental health dx, but not both! if you are in hospital for one thing they have no time or clue how to deal with your other dxs. e.g going for a scan a quadraplegic was told to "just hop up onto the bed" and others have been in for opsbut there has been very little help with changing cathetersfor paralysed urinary tracts. i was left for 2 hours to get undressed for a scan before anyone took time to listen to why i had not undressed my bottom half.... i can't do it without falling off the bed!

YellowTed,
What you described reminded me of a French author who wrote a book by blinking one eye. So i looked up diseases that result in deteriorating muscles. Has anyone ever suggested that you have something called:

Duchenne muscular dystrophy
Pseudohypertrophic muscular dystrophy; Muscular dystrophy - Duchenne type
Last reviewed: February 1, 2012.

Duchenne muscular dystrophy is an inherited disorder that involves muscle weakness, which quickly gets worse.

It also is called DMD.

i am sorry life is so very hard for you.
The DMD i read about seems to have little to do with dissociation but...i am a clueless non doctor. i think here in the USA you might be diagnosed with DMD and something else. The different sites for the DMD are part of muscular dystrophy. Here they have support groups and stuff. Perhaps you can contact the Muscular Dystrophy foundation via email or computer and find some support. Even if you do have a mental issue too, certainly those suffering with the various forms muscular dystrophy have mental struggles too.
i may be all wrong. Forgive me. i just wanted to help you in some way. Even if in a tiny way.

thanks Bmee2, unfortunately as soon as i was given the dissociative motor disorder dx the docs are not interested in whether it is the right dx or not, they only want to save money by not sending me for the tests to see if it is anything else, it took a year of fighting them to get an MRI scan! i have thought of Duchenne muscular dystrophy, especially as my niece had muscle problems too, but the doc just laughed at me and said 'no' wheni mentioned it to him. needless to say i have now changed my doc!

I can't lie, yeah life is hard in many ways, but so are most peoples in their own way, i really believe the harder life gets the things you once saw as huge problems seem very insignificant now, so believe although i have many huge problems now, in years to come they will be small problems, i am not going to dwell on the problems that could be larger than these in years to come partly because it scares me to think my problems are going to get worse and partly because i live for the here and now because life is too short to waste it. I still try and do the things i want to do, since my dx i have become a director of a charity supporting those with disability or effects of age to shape their own life, I am a buddy supporter, have recently qualified as a support broker, and am training to be an advocate. so all in all life is better now than before my dx when i was alone and housebound for 18 months! I had a good grounding of 'having to stand on my own two feet' which although was not great as a child has proven very useful since becoming ill as it gives me the determination to fight for what i need! I just have to very aware of my limitations and stop before i flop! I have just recently stopped feeling guilty for taking duvet days, and only because i remind myself that if i sit on my bum all day every day i will get pressure sores!

What a wonderful outlook on your situation. Thank you so much for sharing. A very gentle hug to you.

Hi - recently diagnosed with DMD (march 2013) - remission soon after then erupted into a full-blown occasion in Oct 13, worse than initial diagnosis. Mine is located solely in the right arm and shoulder with some numbness and tingling in the right hand. its bloody annoying more than anything as I do not appear to have lost any real function but I am now worried about driving / cycling as some of the twitches / convulsions are quite severe. (threw coffee 10 feet across the lounge carpet and dropped the cup the other day.) had an MRI in march which came bake OK but have now had to re-present myself to my neurologist to be referred to a specialist unit in London dealing with obscure motor disorders - anyone else exhibited / experienced such conditions and how did they deal with them / get them treated?
Many thanks.