Summary - Part Two

Summary of What Happened - Part TWO


I was refused to be hospitalized unless I submitted to abuse and it be kept under psychiatric, and the extent of the physical damage was being totally ignored, the medical records, they make guessing games from the Toronto East General Hospital.


The GP seeing me in my home repeatedly refused to help or report that I was being badly abused in the hospitals has had a prior GP as well after the Sunnybrook incident in July 2003, whom I also reported the falsfified sucidie attempts and getting the absurd mis-diagnosis off my medical records, to which he replied was impossible to get your medical records changed or corrected once they were on computers (which I found out far to late wasn't true. On the Toronto East General ER records, Dystonia, head droop, oral dyskenisa, crippled since Lamictal were on the records at least since January and again in February 2004. The GP seeing me in my home never said the word Dystonia, or movement disorders, yet they are written all through her personal notes. She told me it was "10% in my brain the rest is psychological". She said she didn't want anyone around except homecare when she was there, including my mom. She also refused supportive care housing; the other GP falsified the papers for it  with no physical damage . I told her I had been kicked out of hospitals prior when she asked me to call 911, when I was going through withdrawals, if I needed, her response quote "what does that have to do with me".




I was waking up to seizures and unknown at the time, Dystonia convulsions every day for months (full body muscle spasms or slow and rapid jerking that had started march 2003 and came out every time prior I had come off medications causing rigidity), the Dystonia never stopped as well as other movement disorders leaving me paralyzed from the waist down for days,  often for months that turned into years on and off unless I could get them under control before the dystonia paralyzed and cramped on my hips and legs. I had  dyskenic movements, oral tardive dyskenisa, the seizures did slow down after a few years for the most part, they were severe for several years, I still have them, nothing like the ones I endured for several years.


In late 2003, or early 2004 the former Minister of Health, George Smitherman was to have an investigation into the collusion, no treatment care and abuse. I was given the run around for months. Two of his staff said there was one, I was given the name of a civil servant who said he was having an investigation, but I never heard from them again nor would my calls be taken.




February 2004, mom phone the GP I had since 2001 and said get me in to the Mt. Sinai Hospital stat, that I wasn't mentally ill, didn't hear voices, and get the extensive damage take care of.  My long time friend of over 20 years Joseph Florence wheelchaired me there and drove us and left thinking I was now going to be hospitalized for sure. We had to wait quite sometime, an ER doctor was called in, it looked like he had been off duty and wasn't pleased. He only ran blood tests, and I told the nurse the seizures came down when given saline which she whispered into the ER doctor's ear. My left side was dragging behind me badly, and I was stiff. I asked if she wanted to take my blood pressure standing up, not just laying down, she said no. He said all the tests were normal, and I was trying to get to the bathroom just behind my wheelchair, my left leg dragging behind me, and he said there was nothing wrong with me and no reason to hospitalize me, mom said look at her, he said “she can walk just fine”. She said we weren't leaving until they hospitalized me, he said he would call the police and have us thrown out. He didn't call the police but we left. Mom, fortunately found a cab driver who would wheelchair me right up to my home, which was a rare find, and we paid him for it, of course. As it turned out, the GP had only reported for seizures, not the extensive psychical damage or the full neurological work up my mother had demanded.




May 2004 I was referred to a neurologist by the original GP of 2001, after I made it to his office and friend taking me, my muscles and ligements still stiff, my left side dragging, demanding I be sent to a neurologist for everything and stop the seizures. It was the first time he saw the left side of my body dragging and his mouth fell open. He said he would send me right away. I was sent to a neurologist, who examined me abit sitting up on the table, my left side weak and dragging, my right side parkinsonium movements and tremors.  He said “it is so complicated it is beyond my expertise”, "why were you sent to me", he was clearly upset, and wanted me at the Western.He also said to see the new GP seeing me in my home for medication changes, as I was left to seize and convulse every day, until I learned to break the gel cap of Amantadine open with my teeth 100mg, (should have been x2 day and night), 8-6mg of clonazpam and 800 mg of gabipentin and go back to sleep before my  brain fully woke up or I would be paralzed from the waist down, unknown to me from dystonia. I didn't realize I had dystonia until June 2004, both tardive dystonia and I suspected myoloconic dystonia, which I mentioned to the GP in my home ,. They refused medication adjustments or changes and I was left in an unstablized state every day, waiting to see if I would paralzye or not.


May 12, 2004. GP seeing me in house says she remembers getting the positive seizure test from the Toronto East General Hospital. I ask her to repeat that. She does and goes on to talk about Epilepsy, and pseudo-seizures, she started concentrating on the latter. Saying emotions can make them worse. Stress makes dystonia and seizures worse, it also causes heart attacks, it doesn't make them pseudo-anything, neither does low blood volume POTS or NMHypotension. Also every time I told her I was being abused in the hospitals she would walk out, saying 'we don't have anything to talk about then" . GP's are supposed to not only report patients being abused, they are supposed to advocate for you. I told her I had been abused at the Toronto East General and severely so at Scarborough Hospital and tortured, saying the seizures where "psychiatric" I think I said "psychological" to her, that is not what the neurologist called out. I said why didn't my positive seizure test go through. She said it wasn't her problem and to talk to the neurologist#2 (the one who called my mom about the imovane) at the Toronto General Hospital. She didn't want to talk about the abuse, or collusion and start packing her bags to leave every time abuse in the hospitals was brought up. She was not concerned in the least regarding myself and my safety. At one point I said I didn't want her, I wouldn't release anymore records, I already regretted that I had released any, she was only interested in my Hep C history and never got that right. She said she would take down my ME/CFS and FM history and never did. In the beginning she didn't want to know what happened regarding the the damage and the drugs or doctors and hospitals involved or my medical records. Now all of a sudden she wanted all my medical records which I knew were falsified, and I wasn't giving. And I was concerned she was involved in the collusion, my mom said she was, and my life was in danger.




May 2004; EEG node pack St. Micheal's Hospital, 48 hour. The first appointment I couldn't make it because the seizures and still unknown to me the full body movement disorder that started March 2003 and had come out full since coming off the psychotropic drugging, were still too bad and I could;'t get out of the house. The 2nd one the Access Center canceled my paid for ride and PSW to push my manual wheelchair. A friend took me. I barley made it, he had to keep feeding me Amantadine (dopamine antagonist that works on dystonia, not severe dystonia, so did the clonazapam I was given works on dystonia, which was unknown to me in my ER records at the Toronto East General Jan/Feb/04 and in my medical files back to July 2003, both GP's had the records from the hospital, the first one had the both)  and the new GP had ordered in Valium at my request, as I didn't think I would make it. I was on high dose of clonzapam and gabepiten as well. 

Got me home, by then must have had near 300mg of Amatiadine in me or more , plus the Valium and other drugs and everything STOPPED. I couldn't believe it. I even took a diuretic in the hopes they would start again. I had pushed the button on the pack when I was there to test it, and finally I had a small full body muscle convulsion on the couch and pressed the button, and then later a larger one and went down on the kitchen floor and pushed the button. Had trouble getting the pack back as now the high medications, especially with the Valium were wearing off and the very high dose of Amatadine I was on, the highest ever to get me there and the pack on. 

The written report tests came back 2 contradicting each other, one said I only pushed the button once, the other not at all. I had pushed it 3 times. It had been ordered by a neurologist at the. Toronto East General Hospital, why I bothered I don't know . I knew I was having seizures, I had clued into the fact I was having full body convulsions at the same time almost all the time, with or without seizures although I had noticed the difference at the Scarborough General Hospital.  they also lied saying I said I was having "status epliticius" that's non stop seizures, all the way through, which was a lie. I had said repeatedly for months I was having status epliticus (that's any seizure over 5 minutes that goes non stop) and I had been, I would not have even been able to make it to get the brain pack on, which I barely did.




June 2004, I told  the GP seeing me in my home, I thought I had tardive dystonia, it was ignored as well she started setting up tests I couldn't get to, without consulting me first, some not even the right tests, others I needed not even listed, regardless, I had years of documentation prior to the repeated brain and body damage, that I wouldn't have been able to go to all these tests, I would have crashed in bed the next day. Now I was mostly bedconfined and waking up to seizures and convulsions everyday and would paralyze in bed waist down, if I couldn't get them under control from the low blood volume and dystonia on the back of hips and in my legs.


I also since the "allegd" Acute Dystonia in March 2003, the trunk of my body more weakened and damaged, 4 bulges of muscle (dystonia) were on the back of my buttocks, when the seizing and convulsing started getting out of control they would swell up blocking off more blood and oxygen to my lower body which would paralyze, including my bladder, which unfortunately being soft muscle would unparlize first. I finally started taking the medication, two that works on dystonia, before my brain totally woke up and started getting some control over them after several months, although it was still a battle to see if I could and not paralyze every day.If I did, the Amantadine would take 5-6 hours to unparalze me. In hospital if I was on saline it would take 6-7 hours to unparalleled me.


I told her I wouldn't have any tests at the Toronto East General Hospital, and couldn't make it to the list of tests, she set them up any way and a list of others. She refused to report I I was being abused in the hospitals, saying my seizures were psychiatric after having a positive seizure test at the Toronto East General Hospital. She said, then we didn't have anything to discuss, and what did that have to do with her, and it was the neurologist at the Toronto East General Hospital I should be talking to, I saw 2 there, left seizing for hours after the positive seizure test, partially paralyzed. She was setting up appointments impossible for me to get to, many the wrong ones, the ones I needed not on, refusing fully body MRI or anything that would show the body damage, to all my body or the left side of my body, no diagnosis, treatment care, explanation what had happened and how extensive the damage was. She said the muscle and ligament damage "was in the past" and refused a full body MRI as did everyone else at every turn to keep the extensive damage off my medical records. Dystonia was never mentioned by her even when I brought it up. I was mostly bed confined left seizing and convulsing and paralzed in bed often for months and severe ME/CFS all of this making it even more severe.  

But the tests looked good on paper and like I wasn't complying. In the beginning she had set the movement disorder clinic at the Western. After more damage became apparaent and  on her watch, when I called to find out who would be responsible for getting the tests for the damage, they said my doctors. At first she was abit upset, saying that was before, then she said what do you want me to do, I said I can't do anything until the seizures are under control at least. In the hallway she said "that is in the past", the testing for muscle and ligament damage.


June 2004, on the Amantatine, gabipentin, clonzapam, I could make it out by myself a few times in my power wheelchair if I got the convulsions under control in the am or I would be parlized in bed  from the waist down, until the amantadine worked 5-7 hours later. I made it up to Jack Layton's campaign office and talked to him. He said there was nothing he could do about the hosptials. I asked about a Press Conference, he laughed, small laugh, saying that would cost $10,000.00. We talked about when he lived in co-op housing. He said he could help me with my housing situation, "supportive care" and I was directed to a someone with a small desk who took my information, and I never heard from them again regarding housing. A prior Cota worker got a letter out of Marilyn Churley that wasn't even correct. Other requests for help were denied, saying not his jurisidiction. Another attempt I made it Marilyn Churley's office near by, I was asked "are you the one that has been sending all the emails", yes. I asked for to see her, an appointment. I was told I would have to make one and see her at Queen's Park. I had barely made it there, had only been out a couple of times since coming off the drugs, I was left seizing and convulsing every day and badly damaged, I couldn't believe it.


July of 2004 at the Western, supposed to be a 48 hour EEG with video, was supposed to be set up by the new GP, turned out it was the Toronto East General Hosptal who made the change from the neurlogist I had seen in private practice, although she sent the letter, it refers to "behavioural disturbances that have suggested seizure disorder". (after she told me she got the positive EEG seizure test from the Toronto East General Hosptial) he was told I already had a positive seizure test - not on mentioned in the letter - he said "that didn't matter" , also the GP from 2001, was telling me I was going to see this neurolgist now but the neurologist I was supposed to see would drop in and this was his assocaite. He said I would have to come in 8am-5pm 2 days in a row and leave which was impossible for me, and to stay on the medications I had been prescried. Jospeh and I told him I couldn't make, even a day was unlikely and I would crash the next day from my ME/CFS into bed, he said he didn't have the staff or could justify the time. I was was refused the 48 hour EEG with Video by the neurologist, and with no tests, GP#1 in letter say he said the were psychatric which he did in his discharge letter., he was also read the only letter I had by Joesph who took me, which she had as well, from the GP stating repeatedly body damage had been done during 2003, my very low functioning levles, being mostly bed/houseconfined and my illnesses.


Joesph told him I wasn't bipolar and he had know me for 20 years, it almost became an argument (not listed in the letter, however changed to "given Lamictal for perceived bipolar disorder or depression"), I started to have a small seizure while in the office and couldn't speak and my left side weakened and drooped, as it does before they or movement disorders come one (I can speak through the movement disorders most of the time) Joseph continued on and told him that my seizures would go for hours. He was rude to both Joesph and myself. Joesph got abit upset, he is a retired senior airline captain, and not used to being talked to that way, nor the was I was being talked to. The Neurologlist told me it was impossible to get seizures from antibiotic, it was listed as side effect. I had seizures started several times by antibiotics. Not mentioned on the records, nor is the length of time I was on the Imovane.


In the records to the GP seeing me in my home, most of what was said and happened is not record properly or not mentioned at all, however notable quotes from his consult letter " referred for recurrent episodes of behavioral disturbance that have suggested seizure disorder." He keeps referring through out that medications causing any seizures or damage "adverse side effects or drug induced as she calls them" as "bizaare and not very likely". "She needs psychatric treatment. What I can offer is documentation that her spells are indeed not epileptic. I can not justify inpatient stay". Also not listed correctly, although much of the letter is incorrect, is the medications I was on and what for. Also 2 letters went out to the GP seeing me in my home, the others got 1. The hosptial hasn't been able to track down the separate letter that was sent to the GP seeing me in my home.


I knew someone in the neighbourhood who was epilpetic, and being treated at the Western, and we just happened to talk just after this a week later. He was being put in for inpatient for is epilpesy and using the same equipment, testing and more, they found the staff and time for him, no problem.




I had told Joseph prior it was a waste of time and effort to even try, he wanted me to try anyway and I did, just to have another psychiatric added to my file. I said when we left "I told you so".


I never saw the GP who had seen me in my home again, actually I hadn't since June 2004.


I had barely made it to the appointment, and I faxed the GP seeing me in my home back saying it was a set up and I had a witness with me. She never replied. Not long after I faxed again and that I needed the test to know how much was dystonia and seizures. I decided I would take the chance of being left alone there, and I would only take enough medication to stablized me long enought to get me there and were off while the test was happening, which would mean they would have to keep me, and I would take the chance of being kicked out of another hosptial again and no one with me. I got the discharge letter in return saying I wasn't cooperating and stating she had already discharged me with no prior notice.


There are over 40 types of seizures. Here is a link to a video of the 48 hour abmulatory with head set on, I was supposed to have at the Western, its Part 2 of this, however both are interesting, and also notes that seizures can start at any time in your life for no reason, (you can have a seizure for your electrolites being out of balance) which the neurologist had said I had nothing in my background to indicate any reason for epilspy and the GP's knowing dysotnia and movement disorders were listed on my medical records:


http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090515/wfive_epilepsy_090516/20090516/




Fall 2004, I get a letter from my GP I had since 2001, who was the one that actually prescribed the pharmaceutical experts 1st round of drugs the Lamictal cocktail to me, who was hiding that I had been so badly damaged along with the Toronto East General, which spread to 5 other hospitals. Sent me a letter, stating that he had to discharge me as a patient, because it was out of his scope of practice and every doctor that he listed falsely stating my seizures were psychatric with the exception of one that says they were organic and fuctional, however all were involved in the collusion and covering for the extensive brain and body damage and dystonia.  He gives a very good timeline for me too in the discharge letter especially of dates, also the names of doctors involved.


In late 2004 I was cut off all doctors and medications and left badly damaged, every muscle and ligament in my body, the left side dragging around on and off, often a precursor to seizures or myoclonic dystonia coming on, and with seizures and dystonia convulsions daily or paralyzing and my original illnesses, my ME/CFS, FM, and Hep C all which had worsened and I crashed into bed just from trying to walk in my own home from the extensive damage to my whole body, my left side dragging around.


In 2005 January/February, at Sunnybrook, with family I hadn't seen in 40 years, and Dr. Saul's letter in hand, stating I had been damaged repeatedly affecting my whole body, and they tried to force them to hospitalize me for everything, including the Dystonia convulsions, and dystonia , all the muscle and ligament damage, my left side dragging. As soon as my files came up, I was unhooked by ER staff saying “what has she done to hurt herself now, we need this space for people who are really sick” and I was relegated to the hallway again and unhooked from oxygen, everything but saline.. 

I started having trouble speaking as the convulsions started to build up, I had taken a very small dose of dopamine antagonist I had left so they could get me there knowing it would stop the full body movement disorder I know thought was myocolonic dystonia and/or dystonia. When it wore off the convulsions started. Nurse in the hall was giving me shots in my IV, a male nurse asked if I could tolerate lorazapm, I could barely get out “no” (I couldn't prior with the Imovane), and she went to give it to me anyway. The male nurse, I couldn't see them, my eyes were fluttering, brain activity was really firing, said “she said no', the female nurse said “give it to her anyway” in a very nasty tone. I don't know where family members were. And ER doctor asked about the full body movement disorder "is this what you mean", but then I couldn
t speak and my brain was firing to much. 

Eventually while coming out of the catscan to find out why the left side of my body was dragging around, all this pushed for my family, I went status-epliticus, non-stop seizures, it took several shots of medication different drugs then Valium finally stopped them. I vaguely remember someone yelling out 'it's over 5 minutes STATUS" I was paralysed waste down and put in ICU, on full oxygen mask, and saline was put on full and fast. Something was put under my tongue. I was asked if I had adverse reactions to drugs, I couldn't speak at the time, the the list is so long. Family guarded my bed until 5:30 am, they refused to hospitalize me or give me medications for the seizures or dystonia. They couldn't promise a ambulance home, I didn't want to take the chance of being left alone, so family brought me home after I unparalized at 5:30 am. The medical records state contradictions, that the movement disorder was conversion or psychogenic disorder often with a question mark, however, it was marked down I had seizure and had paralyzed. Also a very clear note regarding the GP prior involved who discharge me I had since 2001 and had damaged me for life x3, and also reference to testing the other GP was to give me I could never get to leaving out some of the most important testing I needed.


I had been fighting for my records from the Access Center since 2003, they had signed the new consent forms to gather infomration after the laws changed. They signed release forms illegally and gave them out, they gave them to family members with falsified information on them, it took me well into 2006 to get some of them. I was still refused 2 years worth. I didn't go through them until 2008, out of over 100 pages, there is barely  a page that is correct. They kept feeding information to the Toronto East General  until April 2006 when they were cut off, records said I was followed by psychiatric there  until April 2006, even listing drugs I wasn't on, and  I had left psychiatric in March 2003, after being repeatedly damaged for life, and  that is all psychiatry did for and to me, and getting so screwed up on the drugs.


They gave out my falsified records, and consent forms they filled in themselves the Access Center to family members and others, it seemed clear to ward off being sued . I had been fighting for them since 2003, I didn't get them well into 2006 and not all of them, and badly faslfied,  and out of over 100 pages barely one is correct.


A week later, thinking for sure it would be ok now, I had been in ICU, with family members, an old friend of my deceased buddy since I was 16, picked myself and my mom up around 6am. He wheelchaired me down, partially convulsing in the wheelchair which hurt, and laid me on a mattress in the back of the van and took us to the hospital and left for University classed he taught. They knew what to give me, saline with Valium in it, I had started to paralyse from the waist down, just starting. My files came up, and it started again. Now it was psychiatric again, my mom was laying on the bed beside me, fractured lumbar spine. The nurse lifted my legs saying, “see they aren't paralysed I can move them, does anyone else in your family have psychiatric problems?” . The ER doctor started yelling to get out, he hit my mother on the back of her spine hard (assault), while lying down yelling at us. My boots were put back on, my jacket and put in my chair, I was still convulsing not as badly, some of the saline and Valium and time to get in me. I told them I couldn't push the wheelchair, he said he didn't believe me. Then he said my mom could push it, I said she couldn't with her fractured spine and arthritic hands. Someone came down, young girl, long blond hair and asked my name, I thought thank God, I thought she was from neurology as prior when in ICU they set up an appointment for me to see, yet another neurologist. She called out my name, I said “I am over here”. She ignored me, made a phone call, signed something and and left. After a lot of arguing and demanding Patient Advocacy I finally got an ambulance to take me/us home.


January to June 2005: We pushed through the head of the Ontario NDP, to have me hospitalized for everything by Smitherman who as head of the Minsitry of Health then, he was supposed to have an investigation into the collusion , abuse and damage so badly and do treatment or care prio and his staff gave me the run around saying the were for several months and didn't. The NDP were very reluctant. My MPP is Layton, my MPP was Marilyn Churly, the amount of faxes and emails for HELP to these people and others filled BOXES in my home and THEY DID NOTHING. My friend of 20 years and my mom and myself were persistent. My friend finally got through, and the civil servant assigned the case said he was making arrangements to have me hospitalized, who did I want for ME/CFS specialist, I said Alison Bested, then were were told it was going to be at the Toronto East General hospital, and when mention of falsified tests came up and it wasn't the Toronto Western were I needed to be since January 2003 the neurological hospital,  he said “impossible” and hung up the phone. I pleaded more so did  Jospeh, our calls were not returned. As my friend put it, I was regulated to the out basket again. He contacted the media, we all did for years, no one would touch it. I received yet another letter to and to the boxes full of them, this one from the Ministry of Health, saying “I had been given every opportunity to receive medical care, and had an appointment with a neurologist at Sunnybrook, and ended it.


In May 2005 I went to Sunnybrook, via private ambulance, with Dystonia convulsons, and my muscle and ligament damage, left side of my body weakened, etc, on a gurney I had to pay for to get there, I wanted him to see the dystonia. My friend of 20 years was with us, and the neurologist said he was going to talk to my mom and my friend in the other room for a “minute”. My mom would come back out and keep feeding me clonzapam and Gabipentin to keep the convulsions , cramping and paralyzing down from the dystonia.  I was left out of the whole interview. I had told mom  I thought the original damage from the Lamictal cocktail in January 2003 was Neuroleptic malignant syndrome and repeatedly about the dystonia, my friend wasn;t listening about the dystonia. 

She, they were told all this was from being sexually abused as a child  and being a sexual assault survivor and I would do what I was told and see a psychiatrist. He came out and saw me for about 4 minutes, asked me to follow his hand with my eyes and squeeze on his hand. Said it wasn't Neuroleptic malignant syndrome that he didn't believe in ME/CFS and left.  I wasn't told what happened in the interview, I should have been interviewed I was the patient, until we got home via private ambulance again which I had to pay for.




2005, managed to make it to a doctor with mom's help barely, and got some medications, the ones I had been cut off of. She wouldn't take me as a patient, I couldn't get back to her anyway, and said what was on my files, she wouldn't want me as a patient. I told her, look I know I am malpractice case and my records are falsified, can you please give the medications, my mom begged as well.I was having severe problems speaking and had to push my vocal cords to speak from the dystonia in my neck, I told her I was meaning to yell. She gave some medications, 3 months worth after I said I was a malpractice case, the left side of my body dragging badly. I had to make myself so rigid with old medications the full body movement disorder couldnt' get through. Often I put in my own saline, several bags at a time to keep the paralyzing and cramping from dystonia and the convulsions down.


We had told by several people, to get me out of city, or province under a Jane Doe I.D., and several others said to get me out of the country. I looked for sponsors for some time, and stopped after Katrina and donated the money to survivors.


2006 After the Director of the Access Center was to come to my home for the complaints and refused. She was the next chain in the ladder. They kept sending a phamlet for the health review board, I didn't know it was a Tribunal aka Court, I was bed confined and having convulsions, and very ill which they knew, I tried to cancel it, postpone it, they went ahead of course knowing that, got a law firm with tax payers money, the Minister had his own lawyers with tax payers money. And I was left in bed. mom brought up the rules and regulations, I couldn't even lift them they were something like 42 pages. I just found out there is an Obmudsman, I don;'t know if there was then, for the Access Centers, he would have been next in line. I had already contacted the Ontario Obudsman ergarding everying, including this and always told it was the last place of resort, and they didn;'t have much funding.


In 2006, with threats of my LTIP being cut off again, it had to be signed once a year, I don;t know why CPP doesn't once you are accepted, only if you go back to work you report. It took 18 months to be able to get to a doctor, and we finally went to the neurologist I saw in 2004. I was in my power-wheelchair, prior had been the collapsible with a attendant pushing it for me. Going into the office he said “this is the first time I have every seen someone with CFS in a wheelchair” and then “it's psychiatric”. We didn't get to say much, too much begging was going on to get the LTIP papers signed and medications, mom begged. He refused the amantadine which had stopped the dystonia before, gave clonzapam and Gabipentin, and refused to put any damage or the dystonia on my records. Prior hoping I would get medications to stabilized the dystonia, I asked for a full body MRI. He said I wouldn't be able to have it done “here”. He asked where I would have it done, I didn't know where “here” meant. I thought I had to go to the USA. He wrote the script, saying “patient wants full body MRI, has seizures and paralyses”, I think muscle testing was included on it, I can't make it out, he said he had muscle testing in his office at the time with a grin on his face, EMG testing which he never gave me. It was impossible for me to make any MRI, with the full body movement disorder and dystonia left unstabilzed. Also he would have had to fill out forms, a script wasn't enough, and the tests would go back to him.




In 2008, my mother begged a doctor at the Mt. Sinai to have me hospitalized for everything after reading the letter from the GP stating damage had been done and left untreated. They said they were going to call an ambulance and have me hospitalized, finally, at the Western, where I should have been since January 2003. I called the number of the social worker, who said they would send a nurse to see the convulsions (dystonia), I said 5 nurses already had in my own home, she also said “clean slate”. I started to have a convulsion and she went tried to cancel, she didn't know mom was there, who grabbed the phone. She said not to call back, I said I wanted to write, she said no. I got help from friends on line to write letter to the doctor, stating more damage had been done, the Dystonia, and that I needed to be hospitalized for everything for a period of time as well as a list of adverse drug reactions. Mom said he had talked to neurologists at the Western about the Dystonia, now he wouldn't acknowledge it, he would only say “seizures”. He said the same neurologist who in 1996 had kicked me out of her office for testing for possible temporal lobe epilepsy, said ME/CFS wasn't a neurological illness and she wouldn't treat for it. She would give me medications recommend by the Western after. He then said to call an ambulance myself. I said they go where the first bed is available, and I had been abused in the hospitals which he replied “that's not true”, and that I needed to be at the Western and hopefully the Mt. Sinai after with my power wheelchair with me so I couldn't be left stranded, I needed more tests that they could do, I needed extensive testing, the damage is so complicated and extensive, glasses, I hadn't never been able to get my viral load or geno type done for my Hep C, I had a fibroid under my liver. And also no dentist for years, my left jaw dislocating and destroying my once beautiful teeth being crammed in together.  I was told to call a private ambulance myself and go to the Western, and then I would have see an intern at the clinic and all the tests set up separately, and they would put my adverse drug reaction list on the records then, even though he already had a copy of most of them.


For years I have had Generalized Dystonia spreading through my body and worsening, groups of muscles and ligaments severely cramped together. My right cheek, both sides of my neck, my hands, feet, then below my knees along the outside of my calves along my ankles forcing them inward, down my spine just like the acute dystonia I had convulsions, rapid or slow jerking of my whole body muscles still included, and the whole left side of my body, the weak side, cramping and pushing it to the right. Indicates damage on the right side of the brain. No surprise there, the pain I have on the right side of brain had continued since I came off the drugs in 2004. 

Also if there is too much pressure on my brain, from medications, my muscles and ligaments squeeze down like an accordion towards the floor, just like with the Lamictal. If there is just enough pressure, the left side of my body kicks back in and stops dragging around. Too much, my speech worsens, often I can't speak at all. When the dystonia cramping gets severe, on top of my damaged muscle and ligaments, it is excruciating. My dystonia is also alcohol responsive. I used beer, and when I paralyse or it is cramped to badly and I am arched backwards like a bow, like just the original acute dystonia, I have to be given some form of alcohol to stop it, which has greatly worsened my ME/CFS and my Hep C. I can't tolerate alcohol very much, barely.


June 2008, I was cut off the little medication I had, had LTIP forms were being due to be signed again. The neurologist had faxed them for 2007 and had given repeats on the meds until June 2008 when I was cut off. I had been using alternatives to try and produce the dopamine and other medicaitons I needed in my body, mostly through aminio acids, which greatly helped, but back fired, the increase norenphenrine, that creates antidepressant subsance and enpenphrine that worsensn dystonia. While they had reduced the myolonic dystonia, the generalized dystonia was would cramp severely after a few months.

I also used wheatgrass to increase my blood volume, it is very much like hemoglobin, which helps but only while on it. I have had saline in my home since coming off the drugs, to pump up my blood volume, but haven't used it in years, it was too hard. So I had a little medication left  and putting up with landing on the floor convulsing and or cramping and paralzying everyday, , except I could usually make it to bed as I can feel the electrical tremors coming up my spine prior and increase brain actitivy. .It took until June 2009until I made it with the help of some one very special. I had ordered a private ambulance, and had it held on the side, when they said they would get me there. It was the first time I was out since 2007. He finally put Dystonia on the long term disability form at my insistence,  and only one medication for it which was never enough, the clonazepam with 2 repeats and said he would not prescribe more medication until I had a family doctor. 

We had argued about this the prior year, as I couldn't find a doctor to come in home, let alone one who knew about ME/CFS and FM, and high maintenance case and the College of Physicians and Surgeons said there was nothing they could do, they couldn't force doctors, or hospitals to do anything. The doctors that came in house for cold and flu's don;t sign disability papers, give the medication I need, or have any knowledge of my illnesses let alone the extensive physical damage done.




Not only have I been left with every or almost every muscle and ligament damaged in my body, the left side damaged and dragging around, convulsing every day from the dystonia, still have seizures, and generalized dystonia that has been spreading through my body for years, my arm sockets badly damaged left convulsing every day, as well as my major illnesses I didn't think I woiuld live through ME/CFS, FM and Hep C, all which have greatly worsened. Every document for support was falisifed after by doctor(s) involved.


My supportive care wheelchair accessible housing, rent to geared housing.  My power-wheelchair had been put through on my ME/CFS/FM, not the repeated brain and body damage; I wondered why it had to be appealed thereby affecting many items I am entitled to by Assistive Devices Program (ADP). After 5 years I am entitled to a new one, my body damage/diagnosis not on my medical records, although I have little doubt what the were, and items that would have been covered for under my own insurance plan not given and the damage excluded every almost every other form you can think of.


I am still alive, barely if feels like on some days. And although we tried all avenues for help, and wrote to every level of government, media, college of physician's and surgeons, police, amnesty, ombudsman, people for sponsorship or to help, the more we tried the more I was isolated.


My present fuctioning level is bedconfined, waking up to myocolonic convulsions every day, right way, or shortly after if I have not paralzed from dystonia first. The generalized dystonia had gone down my spine, as mentioned, which causes the mucles to shorted and I am bent backwards like a bow, often with the convulsions at the same time. I have parkinsonium, tremors on both sides on my arms a very strong one on my right side and movement of course sets movement disorders off. My arm sockets are so damaged and in so much pain I can't raise them above my head  most of the time, I couldn't for most of 2003 while ont he drugs. When they are lifted even my the caregiver, it sets off the movements disorders badly, the left side of my body goes weak and that is a precourser to them coming on most of the time as well. 

The damage is very complicated, as well with my illnessess and drug sensitivies and intolerances, it makes it even more challening. I can make to the computer in the livingroom, not all the time, often it is in bed with now , I exist there too much as it is. Often I can only look at it, or delete emails, or copy paste and click, with very short spurts of typing. Cognitive, neurological is very poor, and worsened greatly aftter the first brain and body damaged and is noted on the Access Center records. Ability to understand, and process information. 

Looking at blocks of type, editing, is almost impossible and often I have had help from people, to do letters, and edit mine. Even that has worsened. My typing as is my writing, barely legible, if I can't not get my muscles and ligaments softened enough. Often I type the way my brain chops off words, or the way I speak which is often distored, often I can not speak at all which has been increasing. The myolconic dystonia has been worsening again as the generalized dystonia has been spreading more, it is cramping my spine every day now, so I am bent back in a bow, or pulled forward like in a fetal postion, or arched like a turkish moon and fully paralized, I have been having full body paralzyis since September 2010, which has become life threatening.

 I My shoulder sockets are badly damaged as well from being left to convulse everyday. I have little muscle left on the top of my arms, the ligaments below in my forearms bady damaged, shortend and stiff and I can't lift much more than a book most times, . I often can't open things, depending which way I have to pull, becaue of the damage to my arms and my hands.


I can't put a clean t-shirt on over my head, rarely. it's too painful for my arm sockets are so damaged what is left of the ligaments, there is barely any muscle on my arms, the sockets themsevles are badly damage. Raising my arms, or moving, walking sets off movement disorders, full body convulsions that look like seizures, slow and rapid jerking of my body, my left side of my body drags around on and off, all my muscles and ligaments damaged, herniated disc's left untreated as with everything else, from my neck and spine giving out repeatedly. My left jaw dislocates since February 2003, from the dystonia, cramming my once beautiful teeth together that are now filled with cavities and the caps I had long worn off. My eye sight has worsend drastically, so has my HepC which I could never make the tests for prior to the repeated brain and body damage.


Often I have been left with only beer or a form of alcholol to stop the dystonia, when the one medication (clonazapam) I was given occasionally after myself and my mother begging the neurologist and wasn't enough, and when I had nothing at all, that is all I had. The generalized dystonia, the cramping of groups of muscles and ligaments in oppostie directions has spread through my body on top of the extensive muscle and ligament damage, and down my spine paralzing me backwards, now paralyzing and cramping all of me for 5-12 hours at a time until a hand comes free, if one does and I can get somethign into my mouth to unparalze me that usually takes 5-6 hours later

. I have dystonia storms on a regular basis, the lower my blood volume the worse they get, same with pushing myself, or too much to my CNS system. Others are taken to ER for dysotnia storms, me I have been left to endure them, hoping I don't have a heart attack as ME survivors are high risk, I have felt I have been close a few times, I may have already had a stroke.


It is very rare can I change my clothes. I often can't tolerate much light or sound. My ME/CFS has been severe for years now,  I didn't think I would be able to keep living with ME/CFS and the FM, it was so severe, the isolation, lack of treatments and good doctors. The Sensory Overload, and CNS problems were always the worst for me, and the fatigue, the pain, I thought I was going crazy, I didn't know what was happening and no one was telling me.


The convulsions daily and cramping of groups of muscles are the equvialent to extensive exercise from the dystonia, which makes me be in continual state of being "crashed" all the time. Prior the extensive muscle and ligament damage in early 2003, just from a bit of walking in my home, would put me in bed for several days, a week, a month. After the dystonia and convulsions, this became near permanent with short spurts in the livingroom if I could get my hands on medication to stop the convulsions, cramping, paralysis and the pain. I was left with severe seizrues for several years after coming off more than 42 psychtropic drugs without informed consent, most I did not need for a neurolgical illness deemed pscyhatric.


I exist in the same clothes for days, sometimes it has been weeks, until I got my private caregiver. I can't be changed or showered in a chair, unless the movement disorders are stabilized, my left side isn't dragging, , the generalized dystonia hasn't cramped parts of my body so badly it has paralized them. I also have to have enough energy to get up and be able to sit up, and not in too much pain. I often wear a brace under my t-shirts to help me sit up or a neck collar to hold my neck up I had to find myself on the internet, the neurologist involved would not even sign a prescription for them, and faxed me to go to walk in clinic, after I faxed him hosptial records from Jan/Feb 2004 with dystonia right on them. He knew back to May 20, 2004 t that I often couldn't hold my neck up or the trunk of my body and did nothing, and may have known about the dystonia as he was in contact with the original GP who did since 2003.  I can't lift much, just filling small water jugs 1/2 full to keep by my bed is hard and painful.




May 2010, I finally get a med-visit doctor in who knew about dystonia, asked who left me like this and prescribed me medications I had been cut off of since 2004, and the clonzapam by the neuro. I got the Amantadine back, not the right dose, or the right medication for generalized dystonia, some pain medications and some others, and the neck collar I needed since 2004 to hold my neck up, and new braces for my spine, i had endured many hernaited disc's which I also had at the time. Med-visit takes up to 8 hours to arrive and most don't like to prescribe the medictions I currently ahve which are not the right medications I need for the dystonia which has worsened drastically after the summer of 2010. Often I can not speak at all or pick up the phone and never know when I can get to the door since 2004 often actually since 2003.

Latest Update December 2010



Woman Paralysing Daily from Dystonia refused hospitalization by Toronto Western Hospital


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 of my body cramping and paralysing from dystonia often unable to 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.


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 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 Joseph Florence, 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. 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 dependant 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.


Joesph Florence 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.


Mr. Florence 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. Mr. Florence 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. However I was refused the 48 hour EEG Video, and psychiatric was put down with no testing. 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. 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 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 – 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, 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. 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 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.


Mr. Florence 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, 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.


Mr. Florence 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 after 7 years and the severe ME/CFS and being mostly bed-house confined ignored, when 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 paralysing every day and the daunting task of finding an in-house doctor with hospital privileges, or go to a clinic which I am unable to do since 2004 and only unless I was on the amantadine, clonzapam, and back then Gabipentin as well, the last I can barely tolerate now. 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 I die paralyzed in my bed.