Above is a picture of me, with parts of my body still paralysed from dystonia, including my spine, hips, legs, neck and arms, in ER December 24, 2010. All my muscles and ligaments where damaged, causing them to be shortened and stiff in January 2003, the dystonia came after. All this from psychotropic drugging, especially during 2003. I received no proper care, treatment or have to this day. It left me unable to lift more than a book, prepare my own food, chop, lift pots or pans, and have to be showered and my clothes changed most of the time. I had one doctor tell me “that's in the past”.
On Christmas Eve Day, I awoke in the morning to something that has been happening to me since March 2003, and daily since April 2004 after coming off 8 years of psychotropic drugging, the slow or fast rapid jerking of my whole body, and parts speak. I was cut off medications and doctors in fall 2004 and since then it has been a daily battle to keep the movement disorder under control and from paralysing, using natural alternatives to create dopamine, relax my damaged muscles and the dystonia and bring down my Central Nervous System. From 2006 - 2009 I was allotted one medicine on and off for dysotnia - clonzapam that was never enough and the scripts faxed in by the neurologist.
Dystonia is the cramping of groups of muscles and ligaments, causing rigidity and often stay permanently cramped in un-natural positions and is extremely painful. I am also a survivor of severe ME/CFS since 1991, which has kept me mostly bed and house-confined.
Being refused the extensive medical care I was and am entitled to for the very complicated physical damaged, I did what I could to keep myself alive. Over the years the muscle and ligament damage and dystonia worsened, and I still awoke to the slow and rapid jerking of my body, parts of me cramping and paralzying often and have been down on almost every part of the floor in my home. I used alternative medicine to create dopamine and bring down my Central Nervous System (CNS), however, after a period of time it would back fire and the dystonia would cramp more.
By October 2010 the dystonia worsened drastically, often all of me has being paralysed for hours at a time as soon or very shortly after waking up. Blocks of muscle on my hips and spine cramp and contract pulling my whole spine backwards, twisted like a pretzel or pulled up almost in a fetal
position, the variations are getting more extreme. My arms have become increasingly cramped to my chest, leaving me unable to access the water jugs kept by my bed or call 911. But then why would I want to call 911, when all I had endured prior from 2003-2010 was physical or verbal abuse by healthcare staff, or refusing to hospitalize me.
911 was called this time by my long time friend of 27 years [name deleted by moderator], a retired Senior Airlines Captain. Ambulance attendants arrived, with a gurney that does not fit in the building elevator. The building and apartments are not wheelchair accessible either, I have been on the waiting list for 10 years for wheelchair accessible housing and supportive or independent care.
The Ambulance team, rolled me in a sheet and got me out via my own manual wheelchair I can not
push, I have a power-wheelchair I am rarely able to use in my own home and have been on the housing list for wheelchair accesssable for 10 years. They got me on the gurney in the lobby and into the ambulance, my long time friend following behind in his car. My body was cramping and contorting severely from the dystonia with electrical storms up my spine, and severe tremors with both arms, as well as extensive muscle and ligament damage underneath from adverse drug reactions in January 2003 that I have received no care, treatments or support for. On the way in the ambulance the Ambulance attendant said I had a seizure as well, it was then the ambulance team turned on the red
warning light and made haste to the Toronto Western Hospital, where they are known to have one of the best movement disorder clinics and care for dystonia in Ontario, which I have been trying to get to
since I was first severely damaged from psychotropic drugging and a misdiagnosis of bipolar in January 2003.
In the ambulance I felt I was verbally pushed to give information I didn't want to and while under extreme duress. Upon arrival I was put in an ER stall around 12 noon. I was left there with no medical care for approximately 4-5 hours. My body was severely contorting and cramping, with paralysis, my muscles and ligaments pulled and feeling like they were being ripped apart, possibly causing more damage to my arm sockets, knee caps and spine that have already endured much damage over the years. One attendant in ER told me “you stop doing that” while trying to get a hospital gown on me and my body contorting and twisting in awkward potions, my arms often going up and down rapidly from strong tremors or cramped to my chest. The dystonia continued to progress to being acute, and a dystonic storm which I have endured repeatedly for years.
I was finally given saline 4 to 5 hours later, the first bag of saline I received was about the size you
would give to a baby, and I have low blood volume as most with Myalgic Encephalomyelitis (ME/CFS) do, some are given IV Saline several times a week. I also belong to a group of ME/CFS survivors
that are drug dose sensitive, especially to antidepressants, but is dependent on the medication and the individual. I had to ask for a catheter, and more saline, and was given 2mg of valumn via IV, and
later 5 mg IV and orally which were amounts given to a child and already had a prescription for clonzapam 2mg x3 day that has never been enough for the dystonia or full body movement disorders or tremors, nor was it when it was 8mg a day. Valium had been written down prior as a “safe medication” for myself. Prior in ER situations, full saline, oxygen and much larger amounts of valumn
administered via IV almost immediately when I arrived, once paralysis set in often a catheter was inserted.
[Friend] repeatedly talked to the ER doctor, the ER doctor would not discuss the situation in front
of me or to me the patient, which has been an ongoing problem since 2004. The ER doctor said the records stated I was to see a psychiatrist 6 years prior, which l and my mother refused as I needed
a neurologist that specialized in damage from psychotropic drugging, movement disorders and dystonia, the later I knew I had since June 2004, the full body movement disorders dated back to March 2003.
[Friend] kept reiterating that physical damage be taken care of in any patient regardless of mental
health issues or not, and that none of the psychiatric labels I had been given were correct. They belong to the psychiatrists that gave them out so liberally with no factual basis. Later in the evening the
ER doctor said I was going to be released, essentially in almost the same state I had been brought in, most of me was still cramped badly and paralysed and no change of medications, leaving me to continue to cramp and paralyze at home, my knee caps now damaged and often giving out as well, or keep calling 911. [Friend] kept insisting for a neurologist which I had asked for shortly after we got there, when I could speak, as often I can not. I was told there were none on duty by the ER doctor. Mr. Florence persisted and the ER doctor found a neurologist that saw me around 9pm. I wasn't as acutely dystonic, but still much of me cramped and paralysed and in horrific pain. I had brought in some of my hospital files which showed “dystonia” back as far as January and February 2004 but were left off as a diagnosis.
I found four suicide attempts in my medical records so far, and I have never tried to kill myself. They already had the letter from a doctor stating my muscles had been repeatedly damage, or weakened as
he put it from trial (bipolar) medications in 2003 and that I am bed house-confined 99-98% since the repeated damaged of 2003, prior 85% house-bed confined from the severe ME/CFS.
The neurologist gave me a minor check over, my legs, ankles and my left jaw that dislocates from dystonia and destroyed my once beautiful teeth since 2004. The neurologist asked about the marked spots I had put on my body, which where the worst of the dystonia was, and cause daily severe muscle cramping and contractions that contorted my body, cramped it and paralysed it in different positions, my arms cramped to my chest my hands often curled in like claws.
i had been promised a 48 hour EEG with Video in mid-2004 I was having severe seizures, and full body movement disorders after coming off 8 years of psychotropic drugging and 11 years of one medication that affected Gaba I had been on high doses of since 1992 and I was refused. The neurologist said they would pick up where they had left off, with the doctor who was to give the 48 hour EEG with Video. I said I needed a movement disorder doctor, I still need the 48 hour EEG with Video, however, I need a doctor present that is also very familiar with dystonia, dyskenisa,
tremors and movement disorders, as I have a mixture, sometimes still with seizure activity and the underlying extesnive muscle and ligament damage. We were counting on them hospitalizing me and
getting me on proper medications and the dystonia under control, and the severe muscle spasming and paralysing on my hips and up my spine, now all of me is paralysing, however. this was not to the be case.
I am also a high maintenance case which many doctors don't like. I was given the the family practice clinic information, I have been mostly bed and house confined since 1994, almost exclusively since 2003 and only out a few times, and this has been used against me.
I was told that the movement disorder clinic now was shorter wait list and I would have an appointment set up by neurology, and, which eluded me for years, that I needed a family doctor – repeatedly for years they have been told I need to be hosptialized I an unable to go back and forth for appointments prior to the extensive physical damage, from the severe ME/CFS alone kept me from many specialists appoints prior. I am bed and house confined 99%. However I needed to be able to get there.
I have no qualms about telling what happened to the world at large about psychiatric labelling, the repeated mis-diagnsosis one absurd: Major Depression caused from the drugs, Dissossative Identity disorder, was the latest lingo for Mulptiple Personalities, over 40 psychatropic drugs later my child hood nicknames I used for inner child journal work since 1992 after getting severe ME/CFS were put down as "alters" 10 years later. That means 2 separate personalites taking over with loss of time, I had no loss of time and no alters, and no other doctor involved reported as a serious misdiagnosis when many knew. Also bipolar, bipolar rapid cycling, none of which I had. However, inside most of the healthcare facilities, once psychiatric is put on your files whether a misdiagnosis or not the care and treatment you receive can be next to none, and often includes abuse. It's taken all these years to get my files left in the condition I am in to start having them corrected. The human error across the board alone is extensive and frightening, any other business would be out of business.
The extensive medical care has eluded me for years and continues and is a disability and human rights issue. I needed to be hospitalized for as much as possible in several sessions which has been an ongoing struggle since 2003. As I have a history of adverse drug reactions quickly it makes it even more important that I am hospitalized for any major medication change.
My friend of 27 years, was then told I was still being sent home in the condition I was in, still much of me paralysed, and not stabilized. He said, “what is to be done then, for her to be left to paralyze in bed every day and call 911 if she is able”. There was no regard for my life and me being left to
paralyze at home, still after all these years, even more life threatening now, often I can't get to the water beside my bed for 5-6 hours. Often I wake up and I am already paralysed or it sets in shortly after my brain fully wakes up as it did in 2004. They could have reduced the cramping and paralysis within several hours but chose not to and also hospitalize me until they got the paralysis under control, observed, assessed, and medications tried in hospital, often botox is used for the muscle contractions and paralysis I have, assign me a doctor in their family clinic and send me home safe
The neurologist said I was still be discharged in this condition, and no medication change, leaving me to battle the paralysis at home, and given clinic numbers and a referral which were impossible for me to get to even if the dystonia was taken care of most of the time, until my over all health improved, and the severe ME/CFS. The medications I have are from Med-visit, which refused any for years citing they only prescribed for colds and flu's. It wasn't until May 2010 I got some medication back that I had been cut off of in 2004, not the right medication then, and not now, the amantadine alone takes almost 5 hours to unparalzye me if I can get it in my mouth before all of me has paralysed, and it's supposed to be 2 a day not 1 and often only given for the first 6 months. Med-visit doctors don't like prescribing the medications I need and it can be a week or more before I can get one of them in and it's near an argument every time.. I could only give old scripts to prove what I had been given prior in 2004, and hope I would be able to speak, pick up the phone and get to the door at any given time since 2004. Med-visit doesn't tell you what time they are coming – the range of hours they may
arrive can be 8 to 10 hours later.
The only thing I have been left to unparalze me is alchohol which many dystonic's have had to use = for me beer which has drastically worsened the ME/CFS and Hepatitis C.
[Friend] had stood there dumbfounded that this was being allowed to happen again, as it happened to me repeatedly since I was first brain damaged in January 2003. An ambulance arrived at the hospital about 1 ½ hours later, wrapped me in a sheet, delivered to my home and put me on my bed, left the sheet with me and also with a severe lung infection just starting and left. I tried to get through to med-visit for days, the line always busy. I was left digging out old antibiotics from 2004 hoping they would still work to some degree or start calling 911 again, which I will have to do until they get me on the right medications and the dystonia and paralysis stabilized as much as possible as well as the “bizarre” slow and rapid jerking of my whole body which the dopamine antagonist does stop.
I was cut off doctors and medications in fall of 2004, homecare that was abusive was shut off in early
2006 as well as for other reasons, and my mother kept me alive with a fractured spine and riddled with osteoporosis-arthritis. My mother and myself begging to get a few prescriptions to try to stop the
movement disorders and the dystonia for years.
The Golden Door is there finally waiting for me at the movement disorder clinic and the neurological hosptial in Toronto where I should have been sent January 2003, after 7 years. With the severe ME/CFS and being mostly bed-house confined ignored, they could have easily hospitalized me, get me on the right track and eventually in the future with a good family in-house doctor, be out in the world again on a regular basis and hopeful for Ampligen in my future for the severe ME/CFS.
No one should be denied health care, it's against the Canadian and Human Rights Charters. The College of Physicians and Surgeons used to make doctors come in-house they haven't for years, it's up to the doctor and most don't like high maintenance cases and the discrimination against survivors of ME/CFS
still persist, even though given a Neurological Diagnostic Code 795 by the Ontario Medical Association, with extra billing time #K037 to try to encourage doctors and health care to stop the discrimination.
I have been through hell and am not out the door yet and need doctors that are willing to help me heal as much as possible, Allopothic and natural. In 2008, another attempt was made to have me hospitalized for everything at the Toronto Western through the Mt. Sinai, they withdrew, and said if I went to the Western I would be hospitalized, put on the right medications and I could go to their clinic after for the medications prescribed for the dystonia and other illnesses. However I couldn't make clinic
appointments, and clearly the promise of the Toronto Western hospitalizing me and getting me on the right medications was not the case either.
What I have had to endure for years, until this partly shining moment is beyond comprehension. I am still left with keeping myself un-paralzed every day and the daunting task of finding an in-house doctor with hospital privileges, or go to a clinic appointmentswhich I am unable to do since 2004, never knowing until the last minute if my condidtion would be stablized and enough energy to get out. They and will not address the extensive medical care I have been denied even if I make it there in short order, they will set up one appointment at a time that I couldn't do prior to being repeatedly brain and body damaged.. Or take private ambulance until they get the dystonia spasming and paralysing under control, and of course I have enough energy, and not in too my pain from the Fibromyalgia and ME/CFS that has left me mostly bed confined and greatly worsened over the years as has the Hepatitis C.
Or I keep calling 911 every day when I paralyse until they hospitalize me, or a in-house doctor appears as soon as possible through health care connect which can take months, and I had to have medical files shut off to any new health care. I don't even know when I can speak or pick up the phone or get to the door, nor I have I since mid-2003. I am able to get the dystonia stablzied for short periods of time and never know when or for how long. I have had short spurts of improvement and others where the dystonia progressed rapidly, all wosening the already severe ME/CFS.
The daunting task of the Canadian Medical system, when one is severely ill for 20 years, and has been repeatedly brain and body damaged, and doctors don't like high maintenance cases. Where is the law written you need a family doctor to be hosptialized first. If I was in a car accident and had this much damage, let alone ill for 20 years, I would have been hosptialized for a period of time with extensive testing, diagnostics, care, and supports to recover
It's long over due the medical profession picked up the peices and give me the extesnive medical care and supports I was and am entitled to since January 2003. That I have survivied this long is beyond belief.