Tuesday, September 22, 2009
Sunday, September 20, 2009
Saturday, September 12, 2009
Friday, September 11, 2009
Summary of What Happened - Part TWO
I was refused to be hospitalized unless I submitted to abuse and it be kept under psychiatric at the Toronto East General Hospital, they were not acknowledging the physical damage to ME The DYSTONIA is on the medical records barely noticeable in ER records, when it was clear I was riddled with it and had been for some time. They left it off as a diagnosis, although the 2 GP's involved had the ER records and knew the whole time, while I was being told it was psychiatric, psychological, etc. One even mentions it their personal records repeatedly throughout. I couldn't hold my neck or trunk of body up often, on the records, no one said a word or discussed it with me or the dystonia. I was told the muscle ligament damage was 'in the past", while I was left unable to prepare my own food, chop it, lift much more than book, thank God I had a microwave as I couldn't lift pots or pans and was left to surive in or beside my bed for the most part. Just keeping my water jugs full is difficult, and sometimes near impossible I am so bad off..
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. . She said she didn't want anyone around except homecare when she was there, including my mom. She also refused supportive care housing, and a full body MRI for the extensive muscle and ligament damage, saying it was too expensive (my caregiver supplied by the access center who was abusing me was getting one for a problem with her knee from the waist down to her feet), and then finally said where no one could hear, "that is in the past". Everyone involved, hospitals doctors all down the line refused full body MRI or any part of my body that would show damage, including muscle testing EMG; the other GP falsified the papers for all my supports, housing, my power-wheelchair, corrective shoes for my deformed feet by mid-2003 and more. .I told her I had been kicked out of hospitals prior when she asked me to call 911, when I was going through massive 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 movement myoclonic movement disorder every day that had started March 2003 after teh Acute Dystonia, for months,I already had spasmodic dystonia on the back of my hips causing me to paralzye when the muscles buldge cramped and locked,. I had dystonia in , my neck, I was extremely more rigid by mid-2003. Tthe Dystonia never stopped spreading or just worsened over time, the seizures did 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 one, 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 for full neurlogical work up, that I wasn't mentally ill, didn't hear voices as noted incorrectly on my medical files, after being give over 50 psychotropic drugs at high doses for me, most I didn't need for a neurological illness severeal psychatrists deemed psychatric and a seritotion problem, and get the extensive damage taken care of. My long time friend of 25 years or more Joseph, 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.
March 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 ligaments still stiff, my left side dragging, demanding I be sent to a neurologist for all the damage 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 didn't specialize in dystonia, movement disorders or extensive muscle ligament damage, , who examined me sitting up on the table, my left side weak and dragging, my right side parkinsonium/tremor movements. 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. I recently (spring 2010) found out the GP only referred me for seizures, and stating only that I had ME/CFS and FM.
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. 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" and possibly flagged my medical records as a difficult patient . 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. 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 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 Amatadine, 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 clonazapam 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 one 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 every 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 the g. Toronto East General Hospital, why I bothered I don't know . I knew I was having seizures. 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 have even been able to make it to get the brain pack on, which I barely did.
June 2004, I told her the GP seeing me in my home, I thought I had tardive dystonia, it was ignored, she had the ER records with dystonia right on them, and head droop as well, she never said a word about it. 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 from the dystonia and low blood volume, if I couldn't get them under control .
I also since the "alleged" Acute Dystonia in March 2003, the trunk of my body more weakened and damaged, 4 bulges of muscle were on the back of my buttocks, the dystonia,, 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 my hips and lock them and my lower half of my body, including my bladder, which unfortunately being soft muscle would un-paralize first. I finally started taking the medication, two that works on dystonia (unknown to me they had given me 2 medicatins that worked on dystonia, saying for seizures only), before my brain/mind totally woke up and went back to sleep until they were working and started getting some control over them after several months.
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 and knowing dystonia was on the medical files as well as dyskensia, seizures. 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. 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 apparent and 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 a bit 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".
June 2004, on the Amantadine, gabipentin, clonazapam, 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 paralzed in bed 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 hospitals. 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 jurisdiction. 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 Hospital who made the change from the neurologist I had seen in private practice, although she sent the letter, it refers to "behavioral disturbances that have suggested seizure disorder". (after she told me she got the positive EEG seizure test from the Toronto East General Hospital) he was told I already had a positive seizure test - not mentioned in the letter - he said "that didn't matter" , also the GP from 2001, was telling me I was going to see this neurologist now but the neurologist I was supposed to see would drop in and this was his associate which was a lie. 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 prescribed. 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. 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 almost 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, 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 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 myoclonic , even low blood volume can cause them as Dr. Bell ME/CFS specialist in the USA well knows, and how much and what kind of 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, and how to get home again in a wheelchair I couldn't push, unless I could use my power-wheelchaiur there, it was a loaner since April 2003 until mine was built in 2004. . 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:
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090515/wfive_epilepsy_090516/20090516/
October 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. He gives a very good timeline for me too in the discharge letter especially of dates, also the names of doctors involved. The dystonia never mentioned by him, I had given print outs of it to the other GP, who never said a word.
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 dystonia coming on, and with seizures and generalized spasmodic dystonia spreading and worsening and slow and rapid jerking of my body daily referred to as myoclonic 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 on and off and weaker than the right side. So much damage to one body from psychtropic drugging..
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 spasmodic Dystonia and dystonia movmement disorder, (everyone forgot to say Dystonia, didn't matter they wanted me out) , 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” ( I have tracked down 4 falsified or incorrect as in human error, suicides on my medical records so far) 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. 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 had adverse side effects, moderately sever proir when on the imovane and load of other medications), 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. 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 to stop them, different drugs then Valium finally stopped them. 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.
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, however, the collusion is very clear.
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, clear collusion, 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, he said “impossible” and hung up the phone. I pleaded more so did my 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 July 2005 I went to Sunnybrook, via private ambulance, with Dystonia, dystonia movement disorders, tremorss, 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 convulsions, spasmodic and muscle ligament damage, rather useless attempt after the other prior abuses at Sunnybrook since January 2003 when they refused to hospitalize me, and the severe abuse in mid-2003 and February 2004. . My friend of well over 20 years was with us, and he said he was going to talk to my mom and him in the other room for a “minute”. My mom would come back out and keep feeding me clonzapam and Gabipentin to keep the convulsions down. I was left out of the whole interview. I had told mom to say I thought the original damage from the Lamictal cocktail in January 2003 was Neuroleptic malignant syndrome, I found out Imovane could cause it, and the drugs were way to high for me and a misdiagnosis to start with,, the psychiatrist at the Toronto East General Hospital had wanted to give me Dantrolene which it is given for, so was one of the other drugs I was given. Apparently the dystonia wasn't even brought up. She, they were told all this was from being sexually abused as a child and varations of same, which I was told by pyschatristsand I would do what I was told and see a psychiatrist. He came out and saw me for about 3 minutes, asked me to follow his hand with my eyes and squeeze on his hand. Said it wasn't Neuroleptic malignant syndrome and left. This would have been the remnants of it from 2003 if that is what happened, not having it at the time. 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.
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, my medical records had been flagged by doctors and possibly hosptials involved. 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. She did, but it was just one script.
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.
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 movement disorders, worsened with low blood volme, as well I had the spasmodic generalized 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 on file first so I wouldn't be damaged more. 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 and able to get around, I needed more tests that they could do, I needed extensive testing, the damage is so complicated and extensive, glasses, my left jaw from dystonia destroying my teeth. 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 it was thought in the lat 90's and could never make it back for the tests I was too bad off and they were too early. And also no dentist for years. 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 some of them, and it was impossible for me to do, which was in the letter they had and clearly had contacted the doctor who wrote it and been told to back off..
For years I have had Generalized spasmodic Dystonia spreading through my body, groups of muscles and ligaments severely cramped together. My right cheek (where it started in the latter 1990's with the first psychiatrist unknown to me), both sides of my neck, back, arms, my hands, feet, then below my knees, my knee caps giving out, , legs along the outside of my calves along my ankles forcing them inward, across my hips, 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. My head and the trunk of my body giving out repatedly, I didn't find out they had neck collars until late 2009 or early 2010 to hold my neck and head up. My whole left side of my body has collapsed, also my spine wobble and give out with me knees, my knee caps damaged, my shoulders badly damaged years ago. 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 and we used it for emergencies when the dystonia would cramp and paralize me, left without right medications, and unable to go to hosptials in the city I grew up in, after what had happened in each one prior from 2003 onward.
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 that worsensn dystonia. While they had reduced the myolonic dystonia, the spasmoidc dystonia was spreading. 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 was taking 1/4 pills and putting up with landing on the floor convulsing everyday and parazlying from the generalized dystonia in my body, , except if t 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, 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 extensive damage, I still need a full body MRI for the extensive muscle and ligament damage and my spine, the dystonia, movement disorders, tremors, seizures, 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, or give the medication I need I was told for years, 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 spasmodic 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, the muscle and ligament damage ws left off, it was left off all supports. . . 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 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 I am almost pallative, the movements and dystonia and muscle ligament damaged drastically worsening the ME/CFS. 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 fuctioning level is mostly bedconfined, waking up to myocolonic convulsions every day, right way, or shortly after. The spasmodic had gone down my spine, as mentioned, which causes the mucles to shorted and I am bent backwards like a bow, and on my hips, in my knees cramping every where, often with the convulsions at the same time, I do notr know how many herniated disc's I have had. I have dystonia in my left jaw since 2004 at least, although clearly I was riddle with it since mid-2003 now that I know what it is, which has pushed my teeth together and breaking some of them off from it dislocating every day. I will have to be knocked out for dentistry as well which can be dangerous for those with ME/CFS, my once beautiful teeth are now a mess, and filled with cavities.
I have parkinsonium, tremors, and movement sets of movement disorders off. My arm sockets are so damaged and in so much pain I can't raise them above my head, I couldn't for most of 2003 while on t he drugs. When they are lifted even by my the caregiver, it sets off the movements disorders badly, the left side of my body goes weak and that is a precourser to the convulsions 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, and often have to have it in bed with me. 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 after 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 spasmodic dystonia has been spreading more, it is cramping my spine every day now, so I am bent back in a bow, often myoclonic convulsions or rapid jerking at the same time. . I have very short periods, a couple of days where it calms down a bit. not stopping, and then goes near non-stop. My shoulder sockets are badly damaged as well from being left to convulse everyday and being left so rigid for so long prior. I have little muscle left on the top of my arms, the ligaments below in my forearms through to my wrists are bady damaged since January 2003, shortend and stiff. 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 lift much more than a light book, chop my own food, or change my own clothes (I have been able to a few times since June 2010, but only a few times and pay for it dearly after), as I finally got some medications from a doctor inhouse who was horrified with the damage done and left like this. He knew right away, and asked who did this and left me like this, I just said malpractice and collusion, he asked who, I declined to say. He was an older doctor and it was of no surprise to him. I was shocked I got any medications at all after being told for years they would only give cold and flu medications. He also filled out my scripts for my neck collar to hold my neck up and braces for the trunk of my body the neuro involved had refused. It's not the right medication and I still wake up to dystonia convulsions, tremors , and parazling, or cramping from the generalized dystonia every day,.
I was able to make it out a few times in the summer of 2010, never knowing until the last minuite if I could get the dystonia under control and had enough energy. Mistakenly I thought it would last, but I got drastically worse several months later, the spamodic dystonia now paralzying and cramping me even more, my arms cramped and parazlied to my chest for several months, and going that way it's looks permanently, that is where the worst of the muscle ligament damage is underneath the dystonia. I now paralyzing for hours a time in bed, day and night, the few medications I have not right, or knock me out from the muscle relaxers that I once used to be able to tolerate before I got ME/CFS, and drug dose intoleratant to many medications since including them. I wish dystonia on or ME/CFS on any one, the dystonia is horrific as it progresses, being left alone with no medical supports and health care has increased that.
I don't know what the right medication is, If I am l-dopa responsive, it may be it. I don't know, and do not want more adverse medication reactions to find out. It is still horrific, just abit less so, to wake up to this every day. My energy has increased slightly as my body is convulsing during most of the day, and cramping and paralyzing which is equivalent of hours of exercise that would put any ME/CFS survivor in bed for days, weeks, or months without the extensive damage on top.
I can rarely put a clean t-shirt on over my head, it's too painful for my damaged arm sockets and sets off movement disorders, very rare can I change my clothes, I don't have the energy, I have been running on a dead battery for 20 years, that I am still alive and have not had a heart attack is unbelievable . I often can't tolerate much light or sound or touch from the ME/CFS has worsened drastically over the years as well as the Hep C, and muscle and ligament damage, with body parts totally collapsing..
I exist in the same clothes for days, sometimes it has been weeks, until I got my private caregiver, now we try for twice a week. I can't be changed or showered in a chair, unless the movement disorders are stabilized, my left side isn't dragging, , the spasmodic 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. I can't lift much, just filling small water jugs 1/2 full to keep by my bed is hard and painful.
The more I move, walk in my home, the more it puts me in bed from my ME/CFS. I am not in wheelchair accessible housing, and am unable to move around much, or sit up long without support, and have severe cognitive and neurological problems that worsened drastically left like this for years. And right now I don't have the energy to type anymore.
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. . She said she didn't want anyone around except homecare when she was there, including my mom. She also refused supportive care housing, and a full body MRI for the extensive muscle and ligament damage, saying it was too expensive (my caregiver supplied by the access center who was abusing me was getting one for a problem with her knee from the waist down to her feet), and then finally said where no one could hear, "that is in the past". Everyone involved, hospitals doctors all down the line refused full body MRI or any part of my body that would show damage, including muscle testing EMG; the other GP falsified the papers for all my supports, housing, my power-wheelchair, corrective shoes for my deformed feet by mid-2003 and more. .I told her I had been kicked out of hospitals prior when she asked me to call 911, when I was going through massive 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 movement myoclonic movement disorder every day that had started March 2003 after teh Acute Dystonia, for months,I already had spasmodic dystonia on the back of my hips causing me to paralzye when the muscles buldge cramped and locked,. I had dystonia in , my neck, I was extremely more rigid by mid-2003. Tthe Dystonia never stopped spreading or just worsened over time, the seizures did 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 one, 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 for full neurlogical work up, that I wasn't mentally ill, didn't hear voices as noted incorrectly on my medical files, after being give over 50 psychotropic drugs at high doses for me, most I didn't need for a neurological illness severeal psychatrists deemed psychatric and a seritotion problem, and get the extensive damage taken care of. My long time friend of 25 years or more Joseph, 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.
March 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 ligaments still stiff, my left side dragging, demanding I be sent to a neurologist for all the damage 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 didn't specialize in dystonia, movement disorders or extensive muscle ligament damage, , who examined me sitting up on the table, my left side weak and dragging, my right side parkinsonium/tremor movements. 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. I recently (spring 2010) found out the GP only referred me for seizures, and stating only that I had ME/CFS and FM.
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. 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" and possibly flagged my medical records as a difficult patient . 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. 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 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 Amatadine, 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 clonazapam 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 one 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 every 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 the g. Toronto East General Hospital, why I bothered I don't know . I knew I was having seizures. 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 have even been able to make it to get the brain pack on, which I barely did.
June 2004, I told her the GP seeing me in my home, I thought I had tardive dystonia, it was ignored, she had the ER records with dystonia right on them, and head droop as well, she never said a word about it. 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 from the dystonia and low blood volume, if I couldn't get them under control .
I also since the "alleged" Acute Dystonia in March 2003, the trunk of my body more weakened and damaged, 4 bulges of muscle were on the back of my buttocks, the dystonia,, 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 my hips and lock them and my lower half of my body, including my bladder, which unfortunately being soft muscle would un-paralize first. I finally started taking the medication, two that works on dystonia (unknown to me they had given me 2 medicatins that worked on dystonia, saying for seizures only), before my brain/mind totally woke up and went back to sleep until they were working and started getting some control over them after several months.
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 and knowing dystonia was on the medical files as well as dyskensia, seizures. 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. 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 apparent and 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 a bit 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".
June 2004, on the Amantadine, gabipentin, clonazapam, 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 paralzed in bed 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 hospitals. 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 jurisdiction. 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 Hospital who made the change from the neurologist I had seen in private practice, although she sent the letter, it refers to "behavioral disturbances that have suggested seizure disorder". (after she told me she got the positive EEG seizure test from the Toronto East General Hospital) he was told I already had a positive seizure test - not mentioned in the letter - he said "that didn't matter" , also the GP from 2001, was telling me I was going to see this neurologist now but the neurologist I was supposed to see would drop in and this was his associate which was a lie. 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 prescribed. 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. 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 almost 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, 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 purposely. 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 myoclonic , even low blood volume can cause them as Dr. Bell ME/CFS specialist in the USA well knows, and how much and what kind of 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, and how to get home again in a wheelchair I couldn't push, unless I could use my power-wheelchaiur there, it was a loaner since April 2003 until mine was built in 2004. . 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:
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090515/wfive_epilepsy_090516/20090516/
October 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. He gives a very good timeline for me too in the discharge letter especially of dates, also the names of doctors involved. The dystonia never mentioned by him, I had given print outs of it to the other GP, who never said a word.
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 dystonia coming on, and with seizures and generalized spasmodic dystonia spreading and worsening and slow and rapid jerking of my body daily referred to as myoclonic 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 on and off and weaker than the right side. So much damage to one body from psychtropic drugging..
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 spasmodic Dystonia and dystonia movmement disorder, (everyone forgot to say Dystonia, didn't matter they wanted me out) , 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” ( I have tracked down 4 falsified or incorrect as in human error, suicides on my medical records so far) 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. 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 had adverse side effects, moderately sever proir when on the imovane and load of other medications), 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. 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 to stop them, different drugs then Valium finally stopped them. 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.
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, however, the collusion is very clear.
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, clear collusion, 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, he said “impossible” and hung up the phone. I pleaded more so did my 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 July 2005 I went to Sunnybrook, via private ambulance, with Dystonia, dystonia movement disorders, tremorss, 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 convulsions, spasmodic and muscle ligament damage, rather useless attempt after the other prior abuses at Sunnybrook since January 2003 when they refused to hospitalize me, and the severe abuse in mid-2003 and February 2004. . My friend of well over 20 years was with us, and he said he was going to talk to my mom and him in the other room for a “minute”. My mom would come back out and keep feeding me clonzapam and Gabipentin to keep the convulsions down. I was left out of the whole interview. I had told mom to say I thought the original damage from the Lamictal cocktail in January 2003 was Neuroleptic malignant syndrome, I found out Imovane could cause it, and the drugs were way to high for me and a misdiagnosis to start with,, the psychiatrist at the Toronto East General Hospital had wanted to give me Dantrolene which it is given for, so was one of the other drugs I was given. Apparently the dystonia wasn't even brought up. She, they were told all this was from being sexually abused as a child and varations of same, which I was told by pyschatristsand I would do what I was told and see a psychiatrist. He came out and saw me for about 3 minutes, asked me to follow his hand with my eyes and squeeze on his hand. Said it wasn't Neuroleptic malignant syndrome and left. This would have been the remnants of it from 2003 if that is what happened, not having it at the time. 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.
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, my medical records had been flagged by doctors and possibly hosptials involved. 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. She did, but it was just one script.
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.
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 movement disorders, worsened with low blood volme, as well I had the spasmodic generalized 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 on file first so I wouldn't be damaged more. 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 and able to get around, I needed more tests that they could do, I needed extensive testing, the damage is so complicated and extensive, glasses, my left jaw from dystonia destroying my teeth. 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 it was thought in the lat 90's and could never make it back for the tests I was too bad off and they were too early. And also no dentist for years. 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 some of them, and it was impossible for me to do, which was in the letter they had and clearly had contacted the doctor who wrote it and been told to back off..
For years I have had Generalized spasmodic Dystonia spreading through my body, groups of muscles and ligaments severely cramped together. My right cheek (where it started in the latter 1990's with the first psychiatrist unknown to me), both sides of my neck, back, arms, my hands, feet, then below my knees, my knee caps giving out, , legs along the outside of my calves along my ankles forcing them inward, across my hips, 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. My head and the trunk of my body giving out repatedly, I didn't find out they had neck collars until late 2009 or early 2010 to hold my neck and head up. My whole left side of my body has collapsed, also my spine wobble and give out with me knees, my knee caps damaged, my shoulders badly damaged years ago. 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 and we used it for emergencies when the dystonia would cramp and paralize me, left without right medications, and unable to go to hosptials in the city I grew up in, after what had happened in each one prior from 2003 onward.
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 that worsensn dystonia. While they had reduced the myolonic dystonia, the spasmoidc dystonia was spreading. 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 was taking 1/4 pills and putting up with landing on the floor convulsing everyday and parazlying from the generalized dystonia in my body, , except if t 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, 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 extensive damage, I still need a full body MRI for the extensive muscle and ligament damage and my spine, the dystonia, movement disorders, tremors, seizures, 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, or give the medication I need I was told for years, 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 spasmodic 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, the muscle and ligament damage ws left off, it was left off all supports. . . 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 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 I am almost pallative, the movements and dystonia and muscle ligament damaged drastically worsening the ME/CFS. 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 fuctioning level is mostly bedconfined, waking up to myocolonic convulsions every day, right way, or shortly after. The spasmodic had gone down my spine, as mentioned, which causes the mucles to shorted and I am bent backwards like a bow, and on my hips, in my knees cramping every where, often with the convulsions at the same time, I do notr know how many herniated disc's I have had. I have dystonia in my left jaw since 2004 at least, although clearly I was riddle with it since mid-2003 now that I know what it is, which has pushed my teeth together and breaking some of them off from it dislocating every day. I will have to be knocked out for dentistry as well which can be dangerous for those with ME/CFS, my once beautiful teeth are now a mess, and filled with cavities.
I have parkinsonium, tremors, and movement sets of movement disorders off. My arm sockets are so damaged and in so much pain I can't raise them above my head, I couldn't for most of 2003 while on t he drugs. When they are lifted even by my the caregiver, it sets off the movements disorders badly, the left side of my body goes weak and that is a precourser to the convulsions 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, and often have to have it in bed with me. 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 after 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 spasmodic dystonia has been spreading more, it is cramping my spine every day now, so I am bent back in a bow, often myoclonic convulsions or rapid jerking at the same time. . I have very short periods, a couple of days where it calms down a bit. not stopping, and then goes near non-stop. My shoulder sockets are badly damaged as well from being left to convulse everyday and being left so rigid for so long prior. I have little muscle left on the top of my arms, the ligaments below in my forearms through to my wrists are bady damaged since January 2003, shortend and stiff. 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 lift much more than a light book, chop my own food, or change my own clothes (I have been able to a few times since June 2010, but only a few times and pay for it dearly after), as I finally got some medications from a doctor inhouse who was horrified with the damage done and left like this. He knew right away, and asked who did this and left me like this, I just said malpractice and collusion, he asked who, I declined to say. He was an older doctor and it was of no surprise to him. I was shocked I got any medications at all after being told for years they would only give cold and flu medications. He also filled out my scripts for my neck collar to hold my neck up and braces for the trunk of my body the neuro involved had refused. It's not the right medication and I still wake up to dystonia convulsions, tremors , and parazling, or cramping from the generalized dystonia every day,.
I was able to make it out a few times in the summer of 2010, never knowing until the last minuite if I could get the dystonia under control and had enough energy. Mistakenly I thought it would last, but I got drastically worse several months later, the spamodic dystonia now paralzying and cramping me even more, my arms cramped and parazlied to my chest for several months, and going that way it's looks permanently, that is where the worst of the muscle ligament damage is underneath the dystonia. I now paralyzing for hours a time in bed, day and night, the few medications I have not right, or knock me out from the muscle relaxers that I once used to be able to tolerate before I got ME/CFS, and drug dose intoleratant to many medications since including them. I wish dystonia on or ME/CFS on any one, the dystonia is horrific as it progresses, being left alone with no medical supports and health care has increased that.
I don't know what the right medication is, If I am l-dopa responsive, it may be it. I don't know, and do not want more adverse medication reactions to find out. It is still horrific, just abit less so, to wake up to this every day. My energy has increased slightly as my body is convulsing during most of the day, and cramping and paralyzing which is equivalent of hours of exercise that would put any ME/CFS survivor in bed for days, weeks, or months without the extensive damage on top.
I can rarely put a clean t-shirt on over my head, it's too painful for my damaged arm sockets and sets off movement disorders, very rare can I change my clothes, I don't have the energy, I have been running on a dead battery for 20 years, that I am still alive and have not had a heart attack is unbelievable . I often can't tolerate much light or sound or touch from the ME/CFS has worsened drastically over the years as well as the Hep C, and muscle and ligament damage, with body parts totally collapsing..
I exist in the same clothes for days, sometimes it has been weeks, until I got my private caregiver, now we try for twice a week. I can't be changed or showered in a chair, unless the movement disorders are stabilized, my left side isn't dragging, , the spasmodic 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. I can't lift much, just filling small water jugs 1/2 full to keep by my bed is hard and painful.
The more I move, walk in my home, the more it puts me in bed from my ME/CFS. I am not in wheelchair accessible housing, and am unable to move around much, or sit up long without support, and have severe cognitive and neurological problems that worsened drastically left like this for years. And right now I don't have the energy to type anymore.
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