is this dystonia or am I psychologically impaired

[linsky]

After a car accident, I have been having severe neck spasms. After seeing just one of them, a Neuro diagnosed me with probable dystonia. After a follow up he reported that it is non-organic and referred me to a psychiatrist who said he thinks I have got one of three things: malingering, factitious disorder, or conversion disorder.
I have had negative MRI and MRA scans.
I am extremely sad about this as I am genuinely not in either three categories.
I am also very annoyed about being labelled as a Psychotic Liar or similar. It not only leaves me without getting the right help, it also puts a slur on my character. I am sorry that I ever went to the hospital to begin with. I should have just tried some other way of coping with this.
I have the full support of family and friends who all know that I am not malingering.
My family doctor was fully supportive of me until he read the psychiatric report, now he is led along by the "experts".

I have posted links to two episodes of my neck being locked if anyone could take a look at a couple of minutes of them to see if the symptoms look familiar and give me any guidance, I would be most appreciative.
I am in the UK and feel that I am now in the 'medical wilderness'
(I also have other symptoms along with these spasms)

http://video.google.com/videoplay?do...74176185912427


http://video.google.com/videoplay?do...16310609186913

I would be grateful if you would emal me with any suggestions.
linsky

[Austinsmom]

Hi
I do not think you are psychologically impaired. It was painful to watch your video, and it looked ODD, just like my son's it is easy to see why doubt can surround dystonia, but trust your gut, you know more than you think.

My son has Dopa Responsive Dystonia a general term used to classify a group of movement disorders that are effectively treated with L-Dopa drugs like Sinemet this drug did wonders for my kid (19) he could not walk ( a few min’s to hours ) all episodic and at times could not talk, (mute) yet he was aware, not seizure, he knows some sign language and could think to sign, just not able to talk, swallowing water can at times be hard for him. His started out with a laying down twisted head bob, when stressed, then it started to cause his legs to go paralyzed, like rags with his toes curling and all his life he had writers cramp, and holds things with a claw like hand. thought it was CP, all this started after a series of brain surgeries. and Seizure meds when he was about 15. I am not sure of causes, think it is a genetic, possible parkinisim???
Being this started with an accident to your neck this could be masking an already slowly appearing dystonia( poss. Genetic )and brain or neck injury flicked the dystonia switch???on ? whiplash and dystonia, ouch!
If I were you I would insist the doctors took all those negative “in your mind” Dx and have them removed from your records, after going to a specialists in Cervical dystonia, and dystonia in general SEE a dystonia movement specialist here are some sites I think may help you
Most ER doctors and even Neurologist know little of dystonia
Hope this helps
Deborah

Cervical dystonia
http://www.dystonia-foundation.org/p...entary/389.php

http://www.dystonia-foundation.org/p...ystonia/41.php


Dystonia links
http://www.dystonia-foundation.org/pages/links/105.php


http://www.geneticalliance.org/ws_di...pport%20Groups

[ainee]

G'day linsky,
If it wasn't SO serious about the doctors telling many that they have psychological problems - it would be funny. Yes, I've been there, just like many others on BT.
Well linsky, we just have to help ourselves and others who have been put into the too hard basket.
I wonder if you've seen an Osteopath, like I suggested. I wonder if he/she found "knotted up" back muscles like the Osteopath found when he examined my spine - which was caused due to an accident in 1995, years before my symptoms arose. My spinal muscles must have been damaged in the accident, then 2 years later I suffered Opisthotonus (arching of the back and symptoms - dead arms, pins and needles, couldn't move at times in bed etc.) - then later on a horrific vibration in my spine that shook the living daylights out of me - then in 2001, I started to suffer horrific neurological (damaged nerve) symptoms - which cross over many different illnesses and conditions.
Absolutley nothing to do with pshchological problems!
These "knotted up" back muscles didn't show up in any tests - even on MRI's with dye. I believe that's why a lot of illnesses and conditions go undiagnosed. I've noticed lately, that my back twists slightly, my legs still jerk, my head tilts up and to the right, and a few other bits and pieces - but my simple treatment has suppressed and reversed most of my symptoms, including the horrific spasms, hurting cramps, twitches, tics etc.
I wonder if you've tried the simple treatment I suggested. I've proven it works - and several other people with all sorts of illnesses and conditions, also said they had better health while taking what I suggested. Maybe - just maybe, it will give you better health to.

Austinsmom - Has your son been to an Osteopath? Maybe he also has "knotted up" back muscles like I did. I guess if I went to the doctor and said my back twists sometimes, he would tell me that I have psychological problems. Not one doctor has ever examined my spine like the Osteopath did. Damage to the spinal nerves can cause many neurological problems. I suffered many symptoms - cramped hands and locked jaw at times.
I think if they forget about calling spinal muscle and spinal damage fancy names and start using a simple treatment which suppressed and eventually reversed many of my symptoms - there would be less ill people.
I believe from my research and findings, that dystonia and other like conditions, are caused by damaged spinal muscles, which can cause damage to the nerves - but go undetected because these cannot be found on MRI's - even with dye.
Have a good day
ainee.

[Austinsmom]

Osteopath,? no my son has 2 vp shunts and his cerebral spinal fluid flows as directed through tubes. He has many conditions

Cranial Osteopath is great for some Hydro kids I have heard, most feel it doesn’t work for kids with Hydrocephalus, but few have mentioned some relief
But looking up your suggestion I found this info, that seem to explain DRD Dystonia pretty well…..


Musculoskeletal system
In mammals, when a muscle contracts, a series of reactions occur. Muscle contraction is stimulated by the motor neuron sending a message to the muscles from the somatic nervous system. Depolarization of the motor neuron results in neurotransmitters being released from the nerve terminal. The space between the nerve teminal and the muscle cell is called the neuromuscular junction. These neurotransmitters diffuse across the synapse and bind to specific receptor sites on the sarcolemma (cell membrane of the muscle fiber). When enough receptors are stimulated, an action potential is generated and the permeability of the sarcolemma is altered. This process is known as initiation.

Glad you got relief from the osteopath, that is wonderful

Linsky, look into a movement dystonia specialist

good luck and keep us updated
Deborah

[DystoniaGal]

check out this website. http://www.parkinsonsappeal.com/

[ainee]

Deborah,
No, I wasn't talking about Osteopathic therapy - just that the Osteopath, when he examined my spine, felt my back muscles were all knotted up.
I understand from your post, that if muscles contract (damaged in any way, perhaps from injury and/or toxin), they can cause damage to the nerves.
This is what I've been writing about - my injury caused my back muscles to "knot up", then later on, causing damage to my spinal nerves, to cause me to display horrific neurological symptoms which cross over many different illnesses and conditions - including over the last few months, I've noticed my body twists slightly, and my head still tilts back and to the right like they have since when I first noticed it in 1999.
Maybe I've had this twisting of my body for as long as I've had all the other symptoms - but with all the hurting symptoms I suffered, a bit of body twisting wasn't a worry.
I only had one visit to the Osteopath - and apart from a bit of spinal realignment - nothing else - except he tried to twist my head around - like they do - even after I told him I had an xray which showed fused neck vertabra, due to an accident as a child. Yes, he tried to screw my head around sharply! - I didn't keep the second appointment.
The relief came from the treatment I experimented with - the treatment for a brain wasting disease in livestock which has neurological symptoms similar to the ones I was displaying. I'm not saying I had a brain wasting disease - many tests didn't find a cause of my illness and symptoms - but I put 2 and 2 together - and found I had similar symptoms to our sheep which were diagnosed with a brain wasting disease - research found we had different causes - but displayed similar symptoms - give or take a few and put into human terms. Having this treatment and knowledge of the symptoms they displayed, saved me from becoming just another statistic.
ainee.

[spitball]

Hi Linsky- It is maddening when the Doctors don't know. I live in the USA, and Conversion Disorder, in my opinion, is a medically/technical way to say I don't know. My best advice would be to go to another Neurologist (preferably a Motion Disorder specialist with Dystonia as their specialty) and not let them know anything about a Psychiatrist's diagnosis. Sometimes it seems certain Doctors will agree with another Doctor without merit. We are the ones who know what we are going through. If the Doctor does not have a test to confirm it is organic in nature, then they do not have a test to deny it. Please excuse me if this is rude, but are the Doctors concerned about testifying in a lawsuit? You never know what anyone else is thinking. Best of luck. Today, after nine years, I was officially diagnosed with Dystonia in my neck. Believe in yourself. You are not a label-you are a person who deserves to be treated with dignity and respect. Doctors are like cars: you need to take them out for a test drive and find the right one for you.

[linsky]

Thanks for all your replies and I apologise for not replying to posts as I have been busy still trying to fight the Neuros and also giving up trying to fight them too.
One big problem that a person when he/she is diagnosed as a psych case is that no one will listen anymore. My family doctor whom was initially very supportive has now withdrawn his support from me because he has read that the Neuros have diagnosed me as a psych patient.
Something positive I have learnt, is that if it is PNKD that I have, all tests carried out between attacks are all returned as 'Normal'. It is PNKD symptoms that I suffer. However, that still does not give me any room to point this out to the doc's at the moment. They, paradoxically have been 'psychologically' impaired by reading a report from one Neuro, then in turn, they not only copy and paste into any other Medical Report they have on me, but they also 'copy and paste' into their brain too. It is really annoying. When I try and reason with them, they quite conveniently brush me away, because "I'm a 'psych case'. A further problem one has in this situation, is the more you fight your corner, they say, see there you are in denial and you really are a psych case. "This is tantamount to being accused of being a criminal, if you defend yourself, it is proof that you really must be a criminal".
Also, to get a second opinion in the UK, you have to get a referral from your family doctor, and all these "clever" guys stick together and back each other up right or wrong.
There is a common joke about Neurologists here where I live in Liverpool UK regarding 'The Walton Center for Neurosurgery and Neurology' - What is the difference between God and a Neurologist? - Answer- God is not a Neurologist! It is a disgraceful state of affairs some of us find ourselves in.
Linsky

[ainee]

linsky,
I believe the simple treatment I experimented, with will give you - and many others, better health like it has for me. I suffered many horrific neurological symptoms. I'm reasonably well now, most of the time.
I experimented with Vitamin B1 tablets. After much experimentation, research, trial and error, I found that 250mgs VB1 tablets - 4 times a day, suppressed my symptoms.
Being a "bit on the heavy side" when I was very ill, I gradually rose each dose til I was taking 500mgs - VB1 - 4 times a day.
Each dose suppressed my symptoms within a few minutes for several hours.
I tried successfully with many other simple things - so it wasn't what I took which mattered, but how it worked in my body which made the difference.
Each dose raised my temperature and heart rate - as if excercising - it increased my blood and oxygen circulation and oxygen content to my body - tissuse, cells, organs, nerves etc. Eventually my horrific symptoms started to reverse.
I still take my treatments - but at a lower dose, as I believe the injury or toxin which was responsible for my symptoms, is still present - but the treatment has repaired damage done to my nervous system.
Always see your doctor before changing any medication - I wasn't taking any doctors medication, and found VB1 is only a water soluble vitamin which goes out in the urine if the body doesn't need it - I don't know if I was low in VB1, but I couldn't possibly be deficient in many of the other things which also gave relief of my symptoms.
Yes linsky, sometimes you have to take the bit between the jaws yourself.
ainee.

[spitball]

Hi- Sorry to hear about the system. It is frustrating. Is it possilbe to turn the tables and ask your Doctors how they plan to treat your alleged psychological issue? Do you have a copy of the Pscyh. evaluation? I wish there was a way to help you. You are right, not the Doctors. One Doctor I treated with in a hospital was a rude individual, and I yelled at him and told him not to expect to be paid for the visit. I figure if there is one place to hurt the not good doctors, it is in the wallet. If only there was a way to find out how many of their patients have been diagnosed as Psychological in nature due to error. Best of luck!