Friday, May 20, 2011

Participatory Medicine - Do's and Don'ts.

Recently I was featured in the National Post in regards to Participatory Medicine. You can find the article here... the-expert-patient-who-knows-best-the-doctor-or-the-patient

The article of course like many only touched the tip of the iceberg. I don't blame Mr. Blackwell that the article makes me look like an arrogant ass, because I am one, but I have good reason to be the way I am. The concept of Participatory Medicine is sound. Doctors and patients working together for the best interest of the patient. It is great when it works. But not everyone can participate without understanding how the Business of Medicine works.

*WARNING - some of the stunts performed here were done by an untrained professional. Do not attempt these types of stunts unless you are sure of your abilities.*

I will apologize now to my friends dealing with 'cog fog'. I have a feeling this will be long.. but I will keep it in short paragraphs to help ease the eye strain. But if you want to survive the medical system, you should read it all.

I learned Participatory Medicine the hard way. I was never sick before in my life. I have had plenty of injuries.   Injuries are different. If you go into a hospital emergency room with your arm hanging off, you get treated. If you go in having a heart attack, you will be treated. Now if you go in with a stroke, and they deem it is not one, then you are sick, and you are not treated. You are tested.

The test starts as soon as you walk in, or are carried through the door. How you respond will determine the outcome. Start by thinking of it as a game. You need to play to survive. But no where does it say you have to play by the rules. For most people with MS, it can take more than 10 years to get a diagnosis from onset. This is only due to not knowing how to play the game. Or playing on the wrong field.

You first need to realize that doctors do not know everything about medicine. It would be impossible. They are taught a basic understanding of medicine and how to look up information. At one time it was big books. Now it is a computer and they use Google and sites like I once had a doctor lay a great big book on my legs so he could see it as he put the top of my arm back in place from the the middle of my chest. Now I have a doctor that uses the Symptom Checker on webmd. Is there a difference? There is one major difference in that the information found on the internet is current.

Doctors are suppose to stay current with their medical training. But, not all do. Many rely on others to teach them. And as far as doctors are concerned, patients are not smart enough because those old books and their teachers say so. Doctors rely on other doctors for information on occasion, but take more information from people that know less than the patients in most cases. These would be the pharmaceutical reps. They are not medical people, they are sales people. Nothing more. They will also sell other things when they can't get work pushing a drug. As reps they are sent pamphlets and brochures, and in some cases may even be given some basic classes on how to best sell that particular drug. Two weeks after they have exhausted the market and are no longer needed, they could be back to selling vacuum cleaners or pet food. (not knocking those industries as I have worked in both)

The problem doctors have now is that patients have access to the same information as the doctor. A patient that is suffering from a particular illness, will undoubtedly have access to even more information as they will be looking for it. One patient is a very small percentage of a primary care doctor's practice. You may have MS, but he also has patients with heart disease, diabetes, cancer and so on. He can not know everything about your illness, and if you take the time to learn, you will know what he never will unless you are prepared to teach him.

There are good doctors and there are bad ones. An example of a good doctor is one that answers a questions with, "I don't know, but I will find out." A great doctor would say, "Let's look it up together." A bad doctor leaves the room, (to check webmd), and come's back and says, "this pill should help." A shitty one just says, "You need this prescription." that just happens to be the same as the brochure on his desk. Now which doctor do you have? I have had them all.

Now the difference between myself and Tom Blackwell, is that he has editors, a legal team, and advertisers to worry about. I don't. As long as I am not lying, I can say anything I want. When people get upset with it, it is only because the truth hurts and they know they can't stop it. Unless they want to shut down the internet.

I came into this illness knowing nothing, I played the game and they played mine, but I have maintained one stipulation. No narcotics. Doctors are taught that patients will lie and fake illnesses to get pills. I am very upfront in the beginning with any doctor. I do not want a prescription for narcotics. Every doctor I have met is told that. The only narcotic prescription I have ever had filled in my life was for Sativex. It is not a drug, it is a cannabis extract that is legal in Canada if you have MS, but stupidly is treated as a narcotic. My reason is simple. I do not drink to excess because I do not like losing my cognitive function, I refuse narcotics for the same reason. Also not surprising is that both alcohol and narcotics are easily addictive. I already have enough problems.

I have little tolerance for stupidity and even less patience with a 'wait and see' approach to anything. I am more than sure that I have pissed off more doctors than have pissed me off. But I played their game and made them play mine. From the emergency room I left with 5 Prednisone pills in my hand and no explanation of what it might be causing this major meltdown. I then went home and looked the drug up, before I put the first one into my mouth. I checked the side effects and what it was used for. Then over the next five days I started looking up all of the symptoms online. When I went back, I had an idea of some of the things that it could be, so I wasn't overly shocked to hear him say it could be ALS or the worse case of MS he had ever seen. The only thought that came to my mind was, figures.

I was then informed that it could take me years to get an actual diagnosis. That become an instant concern that I was not going to tolerate especially in this day and age. Waiting years to get a diagnosis creates a major inconvenience when your company's long term disability has a clause that says no payments until a confirmed diagnosis. Being unable to work, makes survival hard, so I had to resort to other means. I had a family doctor at the time as I was given a prescription for Effexor a couple years earlier for what I know know was my first MS attack. So this family doctor was only ever used to refill the prescriptions. I went to him from the hospital with report in hand with the recommendation that I be sent as soon as possible for an MRI.

His response was that it was a waste of time as he knew exactly what was wrong with me and that an MRI would show nothing. So I told him I wasn't asking for a referral, but that he was writing it regardless what he thought. He wrote it, but then proceeded to tell me that it wouldn't help as I was only depressed. My instant response was, "So you are telling me that depression causes physical pain?" He said .. "yes". So I had to ask, "does physical pain causes depression?" Not in my case as he told me he was 99.9% sure he was correct as we walked to the reception desk. Where he proceeded to write me a prescription for Oxycontin for my imaginary pain. He was fired very loudly in a filled waiting room, and actually ran away as he thought I was going to kill him.

Thankfully he has been removed from our medical system, but not before he let someone die of cancer by continually telling them it was all in their head. So Dr. Zaman would be an example of a really shitty doctor and that is where I started. Walking out of his office I realized that the only one that was going to look out for me was me, and they were in for a big surprise.

One week after the referral was sent, I called the Imaging Department at the hospital. It normally takes 3 to 6 months to get an MRI from the time the referral was sent. A week later, I was in the machine. I called and asked if my referral had been received and if so what day that week would my appointment be and that the time didn't matter. I did that 5 more times to the same place over the next year and a half. I was polite and firm and they were more than willing to accommodate. MRI machines are not used all the time, in most cases they are not utilized to even half their potential. You can be fit in.

So I got a new doctor, that seemed to be in the good category as he was the one that met me in the ER when I first went. He later turned out to be a great doctor when he started admitting what he didn't know, and realized he wasn't going to be able to lie and researched along with me. I used myself as a guinea pig. Out of desperation. We started with symptom management going on the assumption that is was MS and not ALS as I was having pronounced relapses on top of rapid rate of decline in motor skills. I was getting some relief illegally by using cannabis. My doctor knew this and understood my reasoning but would not sign my required forms for Health Canada without an official diagnosis. So I played the game. I took the pills that didn't work, but only after I checked the safety of them. But I also went to him with medication suggestions that we could try. We discussed everything and tried some crazy shit. But I played and I learned and I taught.

I saw two neurologists that both said it looked like MS, but they could not give the diagnosis as only a 'specialist' from the clinic in Halifax could do that. So Mr. MacDougall (not qualified for Dr. title) as a so-called specialist tells me that it is impossible for me to have MS as I am not a female and MS does not cause pain. Now that is what he told me and my better half, which I relay to my doctor which of course stuns him. Then Mr. MacDougall sends his report that was nothing but complete lies. Meanwhile during all of this, I am getting progressively worse and still have no money coming in on top of weekly trips to the hospital for blood work to rule out other diseases that could cause neurological symptoms. Yahoo... I don't have HIV or anything else for that matter other than an expected decrease in vitamin D.

So off I go to the neurosurgeon on another referral to see if he could make sense of my very strange MRI report. He couldn't help me as he could not understand it either. And there lies the biggest part of the problem with the medical industry. No one understand how an MRI works. MS diagnosed by MRI is by the appearance of several bright white spots known as lesions. These are considered to be the scars from the supposed auto-immune system attacking it. I have never had several white spots, I have one that covers the entire right temporal lobe. I asked myself a simple question of how does an MRI work, then I went looking for the answer. I found it and I also found out that those white spots were in fact deposits of iron. This was also later found to be previously proven with a study on MS cadavers.

Within the first year I had seen two neurologists, a neurosurgeon, a hearing and an eye specialist, a pain specialist, two surgeons and a quack from the MS Clinic. Of that group, one helped me and I almost had to beg to get that, but instead of begging, I worked out a deal. She could do a nerve block if the CT-Scan showed stenosis in the nerve, but if it didn't, then she had to do a lumbar puncture for me so I could get a definitive diagnosis regardless the pain and difficulty wit compressed disks. I had the lumbar puncture 2 months later and a confirmed diagnosis of Multiple Sclerosis 2 weeks after that.

So in one and a half years, I went through all of those medical professionals, over 200 blood tests, x-rays, CT-scans, 6 MRI's and biopsies taken to rule out things like Lupus. I literally took thousands of pills with the highest being at the end with 27 per day which 5 were for the side effects from the other 22.  And the only thing I found out in that time was that I was becoming much smarter than they were and that cannabis was the only thing that worked. I have read over 10,000 medical websites and publications. Mostly to do with MS and neurological disorders but a big slew of other disorders as well. I asked questions on over 350 websites and forums to try and get answers of why I have MS but only 1 giant lesion.

It paid off, I got an answer from a very nice retired gentleman that told me I was looking in the wrong books and that I should be looking in forensic pathology books. So I did and that is where I started to find it, which is probably what put me into the hospital and resulted in my useless surgery. But seriously, it throws you for a loop when you find out that all others with your condition have all died within six months of onset and you have beaten them by over a year. It then becomes the constant thought of, is this the last day?

So another relapse and I end up with what I think is a ruptured appendix, which they diagnosed as multiple cancer tumors on my small intestine, which actually turned out to be my MS closing off the small intestine making digestion impossible. So now not only do I know I am going to die, I also know how. Just not when. I got the staples out a week later and we went out west on vacation. We spent a week with awesome people and had a great time. Remember, in an earlier blog, I stated that people with MS are great at lying, well I pulled off the best one in that in all the time we were having fun, I was the only one that knew how bad it was, and that this would be my last vacation ever. I just made sure I didn't ruin it for anyone else. And now that I have written it, they might see how much I really did appreciate that trip and the importance of that continual blue cloud of smoke hanging around my head.

We come back from our vacation and met Mr. Leckey, who actually started out as a doctor with the confirmation that I have a very aggressive form of the disease. In fact the worse he had ever seen. He became a Mr. when he tried to give me very high doses of a drug that has proven never to work for any progressive forms of the disease, but comes with a very high price tag. When I questioned him on this, his response was that, "false hope is better than no hope."  Personally, I think you would be pretty stupid to lie to yourself and that is all that false hope is. But it was Mr. Leckey that actually saved my life, kinda, not really. He pissed me off.

I went home and started ingesting 1 gram a day of concentrated cannabis and started weening myself off all the pharmaceuticals. I no longer needed a wheelchair and I felt great, with all things considered. I continually progressed but I never stopped learning. I learned the triggers for my flares, and how to ease them by using low doses of steroids before the relapse actually happens. It didn't stop the relapses but it did ease the suffering to an extent. I learned that I was deathly allergic to methotrexate and that it will never be near me again.

Then I started to learn how corrupt the medical industry was. I learned that pharmaceutical companies bribe doctors to prescribe their medications, but call it honorariums and such. I also learned that no doctor will risk his career for a patients life. Even a great one. I learned that small pharma companies that want to bring products that work to market can't because the big pharma companies wrote the criteria for clinical trials to ensure they could maintain market share. These are the ones that are now making governments pass laws to make the natural remedies which work and are safe, illegal.

I also did online courses through McGill University and became accredited in the Therapeutic Uses of Cannabinoids in a Clinical Setting. I became an associate researcher and now answer questions for doctors. I also make sure I pass on everything I learn.

I learned the vascular theory of MS and that made by far more sense than any theory put out by the so-called specialists that had already lied to me. Then I learned the corruption in politics with my Health Minister condemning me to death without ever speaking to me or without, as she now admits ever talking to anyone that actually knew any thing about the vascular issues. She admits to only ever talking to the neurologists from the MS Clinic. Who are funded by the pharmaceutical companies making billions of dollars a year on drugs that have never been proven to work and in many cases have caused death. The cost for drugs for MS patients has increased by 150% in the last five years. The cost of living only increases 4% per year, if you are healthy.

I had already proven to myself the benefits of cannabis, so I proved the vascular theory. I proved both on myself, and whether one agrees or not, I only have to prove something to myself to know. Any opinions would be moot. You may not believe in ghosts, because they have never been proven to exist, but if you saw one, you would have your proof. Regardless what anyone there after tells you, you know the truth because you have seen it. We are no different. If you denied it to yourself, you would be one of the stupid ones I mentioned earlier. You can not lie to yourself.

I can call myself an expert in MS because I am. I know more about my MS than any doctor. A doctor does not know how it feels to have MS. I do. A doctor does not know the mental impact of MS. I do. A doctor can not tell me when a relapse is going to hit me. I can. Every person with a disease like this will in time become an expert, if they are involved in their health care. If they are not involved, they are not considered patients, but guinea pigs. Expert patients exist and are easily recognized as they are the ones calling the shots and not trusting a greed driven industry.

It can be fixed.

It will be messy, but you can do it. You first need to learn the truth. Then you need to be prepared to speak out and have the politicians do their jobs instead of working for big corporations. Instead of paying the government $44 million to keep from going to court for getting caught paying off doctors, Serona Merck should have had all of their products removed from the country, with no chance of repackaging it for sale again. Anyone else would have been put out of business. Send a message to the pharmaceutical companies to start helping or to get out now.

Have doctors be willing to learn and help and not book 15 minute appointments with only one question to be asked that gets answered with a pill, in order to push through a continuous source of income. Set up advisory committees made up of medical professionals and the people with the life long illnesses to make informed decisions and not base them on hidden agendas.

The idea behind Participatory Medicine is participation between the patient and the health care professional. If one won't participate, it is doomed to fail. For obvious reasons many would want this to fail and would therefore not participate. Not patients. Patients that learn will participate as it is in their best interest. Any doctor such as the ones in our MS Clinic that do not want to participate could easily get work in a different country. Call it taking out the trash and cleaning up healthcare.

We are treated as lower life forms with diminished intelligence, because that is the way it has always been. We are discriminated against and left to die. Or in many cases, rushed to die with ineffective or unsafe medications. All for someone else's personal gain. The only way you will survive is by becoming an expert of your condition.

I didn't start out as an arrogant ass.. they made me that way.


Monday, May 9, 2011

My Final Blog of the Real Truth of MS

I Win!

All my life I have had to prove myself. Never to anyone else, only to me. We all do it. It would either be to prove that I could do something like jump out of a plane, or better yet, to prove what I thought to be true. In life the only person you ever have to prove anything to is yourself. No one else matters.

Six months ago, I decided against my better judgement, to prove if in fact CCSVI was a key to understanding Multiple Sclerosis and whether or not it could actually prevent death. I made the claim that it would take me 6 months to prove this. I did not do this to save my life, to be honest, I had hoped I was wrong, but I had done my homework and knew that was just wishful thinking. So I had the procedure and proved both now 6 moths later.

Previously, I had already proven that cannabis in sufficient doses could be a safe and effective form of symptom relief in MS. I did this by using Rick Simpson's recipe of extracting all of the essential oils in the cannabis sativa plant and reducing it down to a pure concentrated form. I put this into capsules and each .25 gram capsule delivers the equivalent cannabinoids that you would get by smoking 80 .5gram joints. For the last 2 years, I have been eating four of those pills per day. I lived and more importantly I proved to myself that eating a gram a day of pure concentrate worked to allow me to function. To prove the safety of it, I ate 5 grams per day for 5 days or the equivalent to smoking 8000 joints in 5 days. Yes, that says eight thousand.

Also quite surprisingly, 6 months ago I had informed some very close friends that if the procedure did work, then they would get about 6 months out of me to help find the truth. I feel comfortable in in saying that I have done what I set out to do. In that time I have helped dig out and explain some of the atrocities that people with MS are faced with. But I have also hidden a lot as some of it is even too scary for me to believe. 

On May 5, I explained in my blog why I was not allowed to attend the meeting with the Health Minister. I also said it didn't bother me as much as one might think but never explained why. My reasoning for not being upset is that I knew the outcome of the meeting before they even had it. Unlike everyone else that went to those rallies, I had an email a few days before that gave me the Province's official stance on CCSVI and more importantly, aftercare. I sat on this on purpose and I apologize to no one for it. Knowing who was going to be at the rally, this was not released to prevent an escalation of violence. In actuality, I probably saved a life that day because of the lies being fed to us. There will be acts of violence against neurologists and politicians, but they won't be perpetuated by me.

There will be CCSVI in Nova Scotia. But only after the neurologists and pharmaceutical companies have lost all credibility. That will happen when the trials end to prove it. The only problem you as patients face is that those doctors will continue to try to block these trials from being properly preformed. They already know the outcome and have known from day one. At best, you might be looking at 5 years. Unless other action is taken.

There will not be effective aftercare in Nova Scotia until the trials have passed. Effective care would include testing and in the event of restenosis, angioplasty, These are both specifically excluded as they alone can prove the effectiveness of the CCSVI treatment. In the meantime, this means any of the hundreds of people that have been treated, will not be treated in this province if they experience any restenosis. They will again be forced to leave their country to save their lives because of the greed of our doctors. I won't. I didn't want nor should I have had to leave the country the first time.

People can not understand how a Health Minister could let their constituents die. It is not that hard to understand, when you realize that she admits to never speaking to anyone that actually knows about CCSVI. Her advisers come from the MS Clinic in Halifax. If CCSVI is allowed to be preformed in NS, this place will be closed and that is a ton of money lost. Keeping CCSVI from being allowed is so important that they actually convinced Jock Murray to come out of retirement to help them. For the ones that don't know, Jock is supposedly the country's top MS Specialist. Jock Murray is nothing more than a murderer that got rich off the backs of sick and dieing patients. Nothing more. You can read his bullshit lies .. HERE.

I suppose I could offer a challenge to prove this, but I also know there is no way in Hell he would ever accept it. But if Jock Murray would ever like to meet me in a public form, I will prove that I know not only more about Multiple Sclerosis than him, but that he also is willing to kill people for money. That offer could easily go to the entire clinic as Drs. Leckey and MacDougall have both already proven to be either incompetent or liars, or most likely, both.

Then we come to dear sweet Trudy Campbell whom I have never had this displeasure of meeting. She is not a neurologist, she is the one that actually shoots the poisons into the veins. She is also an advisor/spokesperson to numerous pharmaceutical companies. She actually promotes the off label use of medications that goes directly against Health Canada's policy. She, undoubtedly will be one of the so-called expert advisors. You can read more about Trudy and her friend Freedman .... HERE. Now knowing how much money is actually passing hands through the Halifax MS Clinic, all I can say is if Maureen MacDonald is not getting a cut of it, she is an even bigger idiot than I thought she was.

It is without a doubt that I upset these people, but I know stuff. They don't get mad because of what I am saying about them. They get mad because they know everything I am saying about them is true and it is getting harder for them to hide behind the lies. The first year of medical school does not cover real medicine. It is used to drill into the doctors' heads that their medical boards are God, making them always right and to never go against them, and that patients lie. I have proven that both are untrue. I have no reason to lie and I have yet to meet any doctor that will not let you die to save their own career. There may actually be one or two out there, but I won't meet them in this country.

I have no desire to go through life worrying about restenosis and having to raise thousands of dollars to go break laws in another country just to save my life. I have no desire to commit suicide. But suicide is a symptom of MS and the one that most of your neurologists hope you will take, when you as well run out of drug options. If they can't make anything off you, they don't need you around. Harsh but true. For the last 3 years I wake up each morning looking for reasons to stay alive and not let this disease kill me off just making me another statistic. It is an exhausting search everyday, but now as I feel the restenosis happening and the progression of disability advancing again, I also know I was under treated and have faulty valves. I don't have 5 years left.

I have no reason to look for excuses to stay alive when I have so many more reasons to just end it now. I have lived longer than any known person with my form of MS. I figure I have lived 3 years longer than the ones before me. I have permanent neurological damage in numerous places that won't be repaired. I will never work again which means the three years of teeth shattering seizures, is leaving me with a mouth full of jagged edges that do a great job of ripping my flesh apart because I can't even afford to have them pulled to be able to gum my food. And yet I smile. But I smile because I feel the progression returning and that means I won't have to put up with it near as long as I thought. I am thinking at best, a year, but that might be wishful thinking because no one knows more on how fast this can progress than me.
I no longer go to the doctor because there is nothing he can do for me or would if he could. Yes, even my doctor would let me die before risking his career. I know this and I accept that he is a coward like all other doctors. I no longer care about blood tests and MRI's to prove I was right. Those along with many other secrets will die with me. I don't take vitamins or eat healthy. I have no reason to. My entire life, anything I have done, was done for someone else. It has never been in my nature to be any different. Now I am. I have lived up to my promise and now I will do something for me. Rest before I die. I will never get away from the daily stress that is killing me faster, but I also don't need to pile more onto me making me miserable, killing me faster, and will be of no benefit to me. I am sorry if that seems selfish to some, but I think I have more than deserved this.

People are not born smart. They are born with a brain. How that brain develops and how it is used is the key.  If you feed a brain lies and propaganda, and not teach it to learn for itself, you get an idiot with an under developed brain. A good example of this would be George W Bush with a published IQ of 95. An IQ of 120 is considered average intelligence. My IQ tests since high school have ranged from 142 to 165. On a bad day, I am still above genius. But I am still stupid. Instead of living a life by making other people rich, I should have done it for myself. My only true regret in life now out in the open. That way I could at least leave Chrissy with something other than debt.

Humanity as a whole has pretty much run it's course. Greed has proven to be our downfall. Stupidity feeds that greed. And the stupidity comes from the under developed brains that believe what they are told. I have no other word for these people other than idiot. Se here are some blunt truths, like it or not.

If you believe your doctor has your best interest at heart.. you are an idiot.
If you think that poisons like Tysabri, being injected into your veins is helping you.. you are an idiot.
If you think pharmaceutical companies are here to help.. you are an idiot.
If you think that your government would never hurt you... you are an idiot.
If you think that your government would never lie to you... you are an idiot.
If you believe that charities for MS. Cancer, etc.  help people ... you are an idiot.
If you believe the War on Drugs is a good thing... you are an idiot.
If you think that Osama Bin Laden had anything to do with 9/11 ... well... you are the ultimate idiot.

Now as harsh as that may be, you will notice that the only way these people became idiots is because they have that whole under developed brain thing going on. It is not their fault. Someone needs these idiots. Without the idiots, you would only have a bunch of greedy people trying to screw each other. Remember, we may not be born smart, but we are born greedy. But the cool thing about a brain is that it always wants to learn, and a lot of these 'idiots' are getting the lights turned on and also seeing the truth. Unfortunately as the truth emerges and develops so does the risk of retaliation for being lied to so long. It isn't a prediction, it is inevitable that greed will drive the people against their governments with violence. But that is okay as the governments are already preparing for this as well. The US is getting FEMA internment camps and Canada is getting super prisons.

So I am going to quit while I am ahead and still the winner. I will no longer be spending 80 hours a week digging out the truth. I have nothing else to prove. I will leave the hundreds of Facebook groups and other forums I belong to. I have committed myself to helping finish 2 projects, one for my brother and the second one being the sequel to the first Rick Simpson movie Run From The Cure. Their time is limited. I will still use my Facebook account to converse with friends. I will answer questions truthfully with continued sarcasm, but if you are an idiot, I will also tell you so. If you want on my friend's list, add me. If you no longer want to be on my friend's list, goodbye.

 Now, I am going to sit back, relax, and enjoy what time I have left until the progression hits my internal organs again. I actually said this years ago and at the time I said when the time comes I will be making sure I am sitting back comfortably to watch it all unfold. While smiling and quietly saying, "I told you so."

It's time for the fight to continue without me.

Thursday, May 5, 2011

The Most Feared Man in the Province of Nova Scotia has MS

Today, it became official. The most feared man in this province is not some gun toting terrorist, nor is it a corporate big wig raping the province of it's resources. It isn't even one of our fine police officers that use tazers  and kill sick people. It is me, a dieing man that speaks the truth.

Today across the country, people with Multiple Sclerosis are rallying at their respective Province Houses to raise awareness that the neurologists and Health Ministers are allowing people to suffer and die without allowing them to even have a chance. Every group across the country invited their respective Health Ministers to meet with them, except for the province of Nova Scotia. Maureen MacDonald instead requested to have a "secret private" meeting with some of the attendees at the rally with the sole stipulation that I not be there. This request was made in realization from following our Facebook pages that we would not be asking for a meeting. We have no need to meet with her as we already know the outcome.

What makes me now the officially most feared man in the province is because others have been threatening the life of Maureen MacDonald and I am erroneously being blamed for it. That doesn't bother me as much as you might thing it would. I freely admit to insulting her, exposing her lies, and yes I have even gone so far to make nasty pictures and cartoons of her, but I can also stand before God and make the claim that I have never threatened her. I have maintained from day one that I am more intelligent then her and her supposed expert advisers. It would be very stupid of me to prove myself wrong by breaking the law.

I am not stupid. I know I have been investigated, and probably still am. That just means that they also realize that, 1. I have not broken any laws or I would not be here writing this to you, and 2. I have not lied.

Yesterday during an interview with the National Post, the reporter made an astonishing realization. Although what I write in this blog might look like the rantings of an idiot at times, I am in no way one. My writing looks like it is filled with rage and emotion but never is. So my answer to the reporter was, "I write to provoke emotion, it must work as I didn't call you for this interview." His response was that I was right. People that know me from the internet who do get to meet me online are usually a bit stunned at first as I am not what they expect. I am quiet, reserved, and extremely laid back. Until I am provoked. But I am also much funnier in person.

Unlike many of the people I have been forced to deal with, I have morals that I live by. One is to never cause a violent act against a woman, and in 48 years, although many deserved it, I have never physically harmed any female. Hurting some emotionally I sadly admit to, but never physically. So while my friends are educating the masses on the lies they are being fed, and the Health Minister is explaining how dangerous of a threat I am to her trigger happy police officers SHE called to protect her, she is actually fearing the wrong person. And that makes her an even bigger idiot. I am staying home and writing this to you instead.

Call it a dawning realization, or total paranoia, but knowing they watch our Facebook groups with either their spies or hacking, (yes the police do hack Facebook accounts), I realize why I am feared. The reason for this also causes me to be concerned. The NS Health Minister condemned me to Death last November. I cheated her and lived. She did the same thing to Bill Peart and he died. I am the living proof that she committed murder and proves her 'experts' wrong. Knowing this, I am not sure I want to be in a room full of armed people that in this Province shoot first then ask the questions. And surly not when I can be that damaging to that many peoples credibility and reputations by Heaven forbid, staying alive.

My private laugh comes in the form that while she is fearing big bad ol me, the people that truly may want to harm her are still out there and she is hiding from the wrong person. But regardless, we never wanted a meeting with her because from day one she has only ever been a puppet doing what she is told. I know this and so do most of the ones at the rally. The ones that she should be fearing are the ones that think she is the one controlling the strings. In actuality I don't think I will need to do much more anyway. As the truth emerges, her stupid stance of hiding behind semantics will be her downfall.

So what happens now? Not a damn thing. I have told her time and time again that I do have the out for her that can save lives, her reputation, and even her political career. She refuses to listen and now fears me. At one time I could also have saved the neurologists, but they have been too greedy and have gone too far to be saved. Of course that will die with me as in the end we will win anyway and she will get what she deserves.

Contrary to popular belief, I do not have a death wish. I am not going to make myself be an open target to the ones that fear me. If I was suicidal, I would have been gone long before now especially knowing that with my condition I can be dead in less than a week by "natural causes" anytime I want. It would be an extremely horrid and painful death, but in the end would have have the lasting comfort of not being subjected to the lies and greed destroying the lives of the people in this province. I may not want to live, but I don't want to die... yet.

Whether it is ever allowed in this country or not, I have no intentions of ever having the procedure done again. As upsetting as that may be to some, you also must realize that the only reason I consented to the first one was to prove if it could actually save someone from dieing. Well, with the procedure done on Nov. 20, 2010 and it now being May 2011 where I was not supposed to live past April, I have proven exactly what I wanted to prove.  The CCSVI treatment CAN save lives. Living like this is just not for me.

This just means that at the current rate my disability may be progressing possibly due to restenosis, I will try to enjoy what little life I have left. Unfortunately for you all, it also means you are stuck with my ramblings for at least another six months or so. Maybe longer even longer if I stay away from the insanity.

I am just not backing down from this fight until the truth is known to all.. because I am already killing myself by participating, I have nothing to lose.

Wednesday, May 4, 2011

Reasons to NOT get angioplasty for MS

Recently I ran a poll on Facebook asking for reasons given to NOT allow/recommend angioplasty to correct disrupted blood flow known as CCSVI (Chronic Cerebral Spinal Venous Insufficiency) for people with Multiple Sclerosis. For fun, I left it open to allow others to add reasons for others to vote for as well. I am not going to go through all of them as some were obviously the "true" answers and would never have been told to a patient.

I will take the top five and answer them with some simple logic.

1. MS is not vascular. - There are two theories on MS, Vascular and Auto-immune. The vascular theory is the older and was first identified in 1868 by  French physician and anatomist Charot. In 1882, Ribbert suggested the cause of MS lay in the blocking of capillaries by minute thrombi. Social Constructionism and Medical Sociology: a study of the vascular theory of multiple sclerosis. The auto-immune theory emerged much later, coincidently during the chemical pharmaceutical push in the 1940's and 50's when it was realized that a lot of money could be made with drugs. Due to the Neurological Societies position of placing themselves upon the pedestal proclaiming themselves God based on the fact that everything is controlled neurologically, they successfully caused the Vascular Theory to be ignored. In 2008, it was revived with the ability to test, diagnose, and treat a vascular condition that may or may not be linked to MS, but has improved the quality of life for over 90% of the patients treated. The drugs for the auto-immune theory, have never been able to make that claim. Ever. The vascular theory may not be proven yet but it works better than the auto-immune theory that has never been proven as well.

2. It is not proven safe. - The CCSVI treatment is a simple out patient routine medically referred to as Angioplasty. The first angioplasties done were performed about 3000 BC in Egypt. In 2001, almost 2 million angioplasties were preformed worldwide, with an estimated increase of 8% annually. In 2002, they celebrated their 25th anniversary of doing angioplasty on patients that were awake for the procedure. History of Angioplasty This procedure is performed daily in hospitals for both the arterial and venous systems, but is only considered unsafe if you have Multiple Sclerosis.

3. Relief is from placebo effect. - Placebo usually implies drugs and they are used very often in trials. By taking half of the patients in a drug trial, and giving them a placebo while the others get a real drug, for some reason makes it correct as no one would know if they got the drug or the placebo. When this happens, some patients on the placebo claim they feel better since starting the drug. This is known as the placebo effect. A surgical placebo is the result of a doctor doing a surgery on a patient, then informing the patient that it was successful and they are all better now. In both cases, the placebo is talking about subjective symptoms such as pain. Neither have been proven to act on un-subjective symptoms. The best example to dispel the placebo theory.... If a person with MS can not stand up with their eyes closed due to balance issues, they are not falling over because they "think" they should. They fall because the centre of the brain that controls balance is in distress. I was one that was never able to stand in the shower and close my eyes without causing serious damage in the fall. Immediately after the CCSVI procedure, I like many others regained full balance which is an impossibility with any placebo effect.

4. Not proven effective. - Not proven effective for who? The 12000 plus treated patients with over 90% claiming an improvement to their quality of life will disagree with this statement. On the flip side of the coin, no MS drug has ever been proven effective, but have effectively killed some of their patients. By not allowing the procedure, it will help make sure it can never be proven effective.

5. No relation between CCSVI and MS. - Of course the same could be said about the auto-immune theory and MS. They have had 70 years to prove that relationship and have dismally failed. Being that the CCSVI procedure is still in it's infancy and more time will tell, initial testing shows that over 90% tested with confirmed diagnosis of MS do in fact have blocked or disrupted venous outflow from the brain. Around 40% of the "healthy" (mostly patient family members) ones tested also showed evidence of CCSVI. Unfortunately, that could also mean that those 40% are people just waiting for symptoms to manifest.

Those would be the top five. I purposely left one obvious answer out in hopes that someone else would say it but no one jumped on it so I will add it now.

a. No clinical trials done for proof. - That would be because they do NOT do clinical trials for surgical procedures. The only evidence of a surgical clinical trial that I can find documented evidence on was for Carpel Tunnel Syndrome. No they did not operate on healthy controls. They surveyed treated patients in order to find which of the many styles of the procedure would be most effective. Exactly one of the things treated patients want done but are being ignored.  Following is an excerpt of a conversation with my neurologist;

Me: They do not do clinical trials for surgical procedures.
Dr: They do so! (actually yelled it at me)
Me: Really? Where do they get the healthy controls for the brain surgery trials? (No one is that stupid except maybe my neurologist.)
Dr: *dumbest look I have ever seen on a person.*

There is only one reason why people with MS are being denied this treatment... greed. MS patients are cash cows so of course the ones that stand to lose the most will fight the hardest. The neurologists and pharmaceutical companies are fighting as hard as they can to keep the truth hidden in order to save their sources of income. The patients like me are fighting to save their lives.

Who do you think is going to fight harder?

Friday, April 29, 2011




HALIFAX, NS : MS patients Rally on Thursday, May 5th, 2011, at Province House in Halifax, at 1726 Hollis Street from 1:30 p.m. to 5:00 p.m. Patients who seek the right to have venoplasty to restore proper blood drainage from the brain will be rallying in cities across Canada to ask for the discrimination against MS patients to stop.

It is estimated that approximately 150-200 MS patients across Nova Scotia have undergone what has been coined as the “Liberation Treatment”. Many of these patients have experienced improved quality of life after undergoing treatment.

We are asking for:
1. The right to be tested and treated for CCSVI in Nova Scotia.
2. The right to have proper follow-up upon returning from foreign clinics which include:

  • a. Doppler ultrasound imaging of the drainage veins from the brain;
  • b. the right to be referred to appropriate vascular specialists;
  • c. the right to have a non-biased registry for MS patients who have undergone treatment.

3. The right to chose quality of life over unproven or unavailable medical treatments.

Several MS patients who have undergone liberation therapy are being told by their physicians that they cannot be referred for proper follow-up as their doctor`s license to practice medicine could be revoked. These unfounded threats against our primary care physicians and this systematic discrimination against MS patients who have been treated for Chronic Cerebrospinal Venous Insufficiency (CCSVI) must stop.



Wednesday, April 20, 2011

If I Wanted To Commit Suicide... I Would Go To My MS Clinic

Why would a noted professional such as Dr. Mark Freedman promote a drug that had a death rate of almost 2% in the initial trials? This doctor is supposedly an expert in Multiple Sclerosis, so I am sure he must have read the EMA Assessment Report on Gilenya. Being an expert, he must also be aware that this drug poses the risk to the patient of adding Herpes, Cancers, and organ failures to their suffering.

His only response seems to be, "But it is an oral drug".

That just means they have found a way to make you sicker with a pill instead of a needle.

Luckily for me, I am not eligible for this medication as it is designed for Relapsing Remitting forms of MS. Supposedly, it reduces the number of relapses. But, how would you know? Relapsing remitting means it comes and goes. People can literally go years without a relapse without medications. Gilenya does NOT stop relapses, it just supposedly slows them with no way of knowing.

The side effects for Gilenya are long and serious. All drugs have side effects, but most don't realize the risk they are taking. A good example of the risk is the instructions for your first dose of this medication. "Your first dose of Gilenya will be given in a doctor's office, hospital, or clinic. You will be observed for 6 hours following your first dose."

If you don't have a heart attack and die.. you get a prescription.

Seems safe enough to me. With the added price tag of approximately $48,000 per year, this is probably one of the most expensive forms of Russian Roulette you could play. And supposed experts such as Dr. Freedman, are pushing this poison on patients that don't know better.

I am not sure if this is much better than the risk of Tysabri and PML infections. But, since no one would answer my big Tysabri question on why so much phosphate is added to the infusion. I think I have my answer now. People that stop Tysabri, will forever be trying to increase their phosphate levels with supplements as it seems that Tysabri eats phosphates. Too bad you need phosphates to live.

Not surprisingly, the two most dangerous drug treatments, are also the most expensive, and have never been proven effective. They only way they could be proven effective is if they STOPPED the relapses. They don't.  Why would they push a drug like this? Simple economics. RRMS is the most common form of the disease with approximately 85% of all people with MS. Roughly, 1 million people easily world wide. If Novartis could get complete market share meaning that every person with RRMS was "forced" to use it's drug, they could look at revenues of almost $50 billion. PER YEAR!

They don't make drugs for my form of MS. People with RRMS should take particular note of that. If they can not make an effective drug for progressive forms of the disease, what are the chances they can make one for your form? The answer of course is slim to none but they do appreciate your money.

Welcome to reality. The CCSVI treatment has more than proven itself with evidence and is deemed unsafe. Unsafe compared to what? Our other choices?

Every month we have to pay a bill to the hydro companies for the power we use. We don't like it, but we really have no choice. This of course goes on for many years, and as long as we want to have power, then we have to pay. Then one day along comes a man that has designed a process that allows you to convert all the wasted power back into energy that you can use. Instead of having to pay for power every month, you can eliminate that bill altogether with one simple conversion. It may not be permanent, but at less than the cost of one month's power bill, having to redo it in a few years would still be livable. 

The hydro companies would go ballistic. They would say it is unsafe or illegal. They would call the people that promote this technology scammers and charlatans, and the people that use it would be treated as criminals. Important to note would be if you had any issues following the conversion, the hydro company would refuse to help you because you didn't want to pay a monthly bill.

Welcome to the world of Multiple Sclerosis and our neurologists.

Saturday, March 19, 2011

How Many Have To Die Canada?

With the current rate at 400 per year in Canada, an average of just over 1 patient dies every day in this country as a result of Multiple Sclerosis. On a grand scale, that doesn't mean much, unless you look around the room right now as you read this and select one person you love. Now imagine that person dieing a horribly violent death after years of suffering needlessly. Death from Multiple Sclerosis is not like death from a heart attack. It is a slow, painful, debilitating disease with death usually resulting from organs being shut down by damage done to the nervous system.

Today was Bill's turn. Although we had never met, Bill is my brother. Not biologically or even by choice, but because we were forced to endure our pain and suffering. Bill's wife applied to the same heartless Health Minister to plead for a compassionate request to save Bill's life, like like my family and I did. And again she refused. Out of pure luck, I was able to be treated, proving in fact that this procedure will save your life, to now have to live with the death of Bill that could have been easily prevented.

For months, thousands of people with Multiple Sclerosis in this country have been screaming about the deplorable inactions of our elected officials with their "wait and see" approach to allowing venoplasty on MS patients. Nova Scotia Health Minister Maureen MacDonald (NDP), has taken inaction and turned it into murder. Twice now she has denied legitimate compassionate requests to save lives. Both times she denied them in hopes that they would die forever leaving the question unanswered of whether it would work or not.

William Peart's death this morning and my being able to write this now, prove that it could have worked. It has also proven to the people of Nova Scotia that this elected official that is supposed to have our best interests at heart, only cares for her own personal agenda. She made a choice and chose to let Bill and I die. I fought back, because we all have choices.

Bill's family now has the choice to pursue legal action against Maureen MacDonald for a wrongful death. I will gladly hand over the paperwork I have as I didn't like the thought of my family having to do it all. So I did it before I died.

The people of Nova Scotia have the choice of calling for an election, removal due to conflict of interest, or have the the Nova Scotia Attorney General do the right thing and file charges against Ms. MacDonald.

Sadly, Bill didn't get to have a choice. Maureen MacDonald took that away. So while Bill is watching over us that continue to suffer, we can only be comforted at the thought that he no longer has to. His family are now still forced to suffer knowing that the one person that could have saved his life, refused.

Of course Ms. MacDonald can also make another choice, but the intelligent one for her and her party now would be to allow the procedure once and for all in this province, quietly resign her position, and move very, very far away.

Our province's elected officials have been caught stealing from our public coffers and now our Health Minister commits murder. How many more have to die?

Friday, March 11, 2011

It's Time for Answers

Bill and Donna Peart live in Nova Scotia. Bill has has fought hard and suffered with Multiple Sclerosis for 16 years. Now the disease is winning. Bill even has an appointment outside the country to get the CCSVI treatment that will undoubtedly save his life. Sadly, this appointment is over a month away and Bill can no longer travel.

Appeals again sent to the Nova Scotia Minister of Health to save his life were like mine met with the same basic response. She would rather let him die a painful death. The part she doesn't realize is that some of the people getting this treatment are now again returning to the work force, paying the taxes that are keeping her employed.

Bill is now unable to eat and is looking at a feeding tube to pump food directly into his stomach. Because I have been there, I can tell you now as this disease progresses he will ask to be euthanized to end his torture. That also will be denied. Remember you are allowed to put down an animal to keep it from suffering but humans are forced to endure it because of stupidity. Donna and the rest of Bill's family will also be forced to endure this torture as well without ever knowing why.

I cannot comprehend how someone could display so much intelligence to be put into such a powerful position, yet is making such an asinine decision. There is no logical reason for her to do this unless she has a hidden agenda. So I have asked her boss, Nova Scotia Premier, Darrel Dexter.  I suggest everyone else do the same. Let's see if they have the balls to be honest or continue to be murderers hiding behind a thin veil of political bullshit.

Dear Mr. Premier,

By now I am sure that you as well as the rest of the people in this province realize that your Party made a grevious error with your selection for our Minister of Health.

Your selection for our Health Minister has just condemned another taxpayer in this province to death. The first person was me and that is yet to be dealt with. I have my death sentence in writing that states that her reply to me was only to appease you. Fortunately for me with the help of many friends and being forced to break a few laws, I was able to be successfully treated and am still alive. 

Last night CTV news reported that your Health Minister is going to force Bill Peart, another patient with MS, to die. This patient is no longer able to travel, meaning he can't even take the risk that I took. His only option will now be to suffer and die to only add another nail to your political coffin.

There is no logical reason to deny this treament in Nova Scotia other than to further a corporate agenda. The NDP is all about taxes in this province, so let me enlighten you to what the 3000 people with MS and their friends and family know and are teaching your voters.

People in this province on fixed incomes can not afford to live here because our taxes are higher than anywhere else and we are provided less services. The amount of taxes that are collected and handed over to the Department of Health is exorbatently deplorable. The current average cost that MS patients in this province face is upwards to $50,000 per year in medications. The average lifespan of someone using these drugs might be at best 20 years. This is paid for by you from us and we have 3000 patients.

The cost to do one angioplasty treatment on one MS patients would be less than $5000. Even if this treatment needed to be performed every 6 months, it would still be a considerable savings while offering an improved quality of life for the patient and their family. This alone would be a major win for the rest of the province as taxes could be lowered and I could stop doing all of my shopping in NB. We save approximately $150.00 per shopping trip by driving 10 minutes out of the province.

There are very little risks to this treatment and it is proving to be more and more effective every day. The only risk has been political inaction and the refusal by Canadian doctors, including to myself, to have proper aftercare. Simply put, you could actually save lives and a lot of money by just doing the "right" thing for the people of this province. We aren't asking for this to be etched in stone that every MS patient will get this treatment. All we want is to be able to make our own informed choices. We can't do that if your Health Minister is mis-informed by the very people that stand to lose the most.

You can fix this and possibly save your Party in the process. The Health Minister is refusing to take a risk in fear that something bad might happen. This is recified by having Mr. Peart and his family sign a waiver assuming all risk in the unlikely event that something should happen. If there is a cost associated that the Province does not want to cover, I am more than sure that Mr. Peart and his family with the help of friends could cover that. The procedure could be done in Halifax by a vascular surgeon such as Dr. Patrick Casey who has staff trained in the procedure. If Dr. Casey had any misgivings about performing the procedure, I am more than sure we could get an expert such as Dr. Sandy MacDonald to be on site with a simple invitation.

The pay off for this is that Bill's wife and family will get to enjoy his new found quality of life along with him and not have to watch him suffer to his enevitable end, while you and the Nova Scotia NDP party become the country's hero instead of the disgrace it has become. Or your could ignore us as we have become accustomed to and be willing to commit murder along with your Health Minister.

For months I have been racking my brain to figure out why our Health Minister would take such an inane stance that would cause people to suffer and die. I can only come to one conclusion and I will ask it right out, because you know we will find out regardless.

Mr. Premier, is your Health Minister Maureen MacDonald or any other party member receiving incentives to keep this procedure from happening in Nova Scotia? I can see no other logical reasoning for this treatment to be denied just in the impact to quality of life and savings in taxpayers monies. The people suffering in this province deserve to know the truth.

Maureen MacDonald has solely removed the title of Honorable from the position of Minister of Health by committing the most dishonorable acts imaginable to the people of Nova Scotia.

Wednesday, March 9, 2011

Things You Probably Don't Know About Multiple Sclerosis (and maybe shouldn't)

People die every day from MS. It's true. The reason you don't hear much about these deaths is because of semantics. When you are diagnosed with Multiple Sclerosis it is considered an incurable disease. When you die, an autopsy may or may not be preformed. Regardless, the outcome is the same, once you are labeled with MS, it doesn't matter if the neurological damage stops your heart from beating or your intestines close up not allowing food in, death will always be listed as "Died of Natural Causes." Therefore the claim that MS rarely kills is a blatant lie, everyone with MS will die, the aggressiveness disease just dictates how fast it will kill you.

No one know what causes MS, or how it actually functions. Over the last 150 years, there have been two theories that are completely unrelated from two different branches of medicine. The original theory is that MS is a disease caused by vascular malformations blocking or disrupting blood flow from the brain allowing the blood to oxidize leaving trace elements of iron in the brain causing neurological damage. The second theory to emerge is that MS is an auto-immune disease. Meaning for some unknown reason the body's immune system starts to attack the insulation called myelin that covers the nerves. Neither are correct nor are they wrong, although this last year has proven some remarkable headway into the vascular side with the use of venous angioplasty by clearing obstructions and relieving some symptoms and possibly slowing or stopping progression.

Multiple Sclerosis is one of the hardest known diseases to accurately diagnose. The disease can have over 50 different symptoms associated that can come and go at anytime. Symptoms can be as minor as a small patch of itching skin to a suicidal level of pain. Symptoms may persist for weeks or months, then suddenly stop for years. Also making diagnosis difficult are the number of other disorders that mimic many of the MS symptoms. These include Lyme Disease, ALS, stroke, as well as many others. Therefore the diagnosis criteria is a nightmare as you first need to rule out all the other disorders it could be.

It is said that women are more than double than that of men in having MS. This I also don't think is entirely accurate. This is more likely due to mindset. Males of our species grow up with a slightly different doctrine than our female counterparts. "Suck it up and be a man." As children we are taught not to whine about minor aches, pains, or discomforts as it may show a sign of weakness. I myself went for years with my hands falling asleep every time I tried to hold on to a vibrating steering wheel. I ignored it. It got worse.

For the most part, MS patients are the biggest liars in the world. They will try to walk, talk, and act normal just like everyone else. At least in the beginning. This is not a bad thing. It is only bad that they try to hide what is happening to them in an effort to appear normal to others. The good thing is that they also hide it from their loved ones. MS patients also have very evil thoughts when they hear the words, "Well you look so good", or "Maybe you just need some rest." Another lie that is hard to get them to admit to is wishing their disease on anyone else. It happens. It really is okay to be yourself now. They no longer lock us up in insane asylums for having this disease like they used to.

MS patients get called names. Unfortunately, most of the name calling comes from friends and family members and starts even before you are diagnosed. I hear that in some instances, the name calling stops after the diagnosis, but not in my case, so I just take that as a rumor. Some of these names will be "lazy", "useless", "hypochondriac" and many more.

Every person with MS has an "expert" that knows exactly what they need. Again this is usually friends and family and sometimes it can be very contradictive. You should eat this or not eat this. You need to exercise, you need to rest more. The best thing to do is tell these experts to "shut up and leave you alone". The information they provide is useless to you and you won't get in trouble for being mean to them. (This is covered below with "mood swings.")

The scariest aspect of MS is that any part of the body that is controlled by nerves (try to find one that isn't) can be affected. Imagine if you will that the meylin sheath covering the inferior anal nerves and or the inferior hemorrhoidal nerve becomes damaged.  It can happen. These nerves are extremely important in the human body as they are the nerves that distinguish the difference between a fart and a poop. Nothing more needs to be said. 

The medications they give us are actually doing more harm than good in most cases. A lot of the chemicals used in our medications are classified as carcinogens. The side effects of these medications can actually be worse than the disease and yet have never been proven to be effective. In some cases, these drugs actually caused the deaths of patients during clinical trials, yet are still approved. For example, one well known MS drug therapy for some reason also contains very high concentrates of phosphorous which actually causes neurological damage on top of liver and kidney damage.   

The number one drug that has proven time and time again to be most effective is illegal for MS patients everywhere in the world, except Canada. Since Canada has the highest incidents of MS in the world, this is good for Canadians, but sucks for everyone else. Health Canada has approved cannabis for MS patients. Of the 60 known medicinal compounds in cannabis, over half can be directly beneficial for symptom relief and disease management. Some of these benefits are from the CBD's in the plant that act as vasorelaxants, antispasmodics, neuroprotectives, and analgesics. It works and there is no chance of overdose.

 As a patient you will also be called and treated with two new nanes. Guinea pig and cash cow. Doctors will provide you with experimental medications in an effort to make you feel better while making them more money. The drug therapies that are approved for MS have a very high price tag. The newer therapies are costing $50,000 per year. This make an MS patient a very lucrative commodity. Because of the competition of other drug manufacturers, sales representatives resort to incentive programs for doctors and clinics that prescribe their medications. When your MS doctor suggests a medication that you refuse, he isn't getting mad because you don't believe it will work, he is mad because he is making nothing off you. 

 You would also think that a person with MS would have a place to turn for help. Sadly, this is also not true. Each country has a Multiple Sclerosis Society in one form or another. These organizations collect donations and do fund raising in the hopes of one day finding a cure. Their executive positions are very well paid careers. The majority of the money they collect goes to administration costs. The majority of the rest is used for advertising, and donations to pharmaceutical research in the form of grants. The last thing they would ever want is a cure for MS. For them to say otherwise is a lie as a cure means they will be unemployed. With the remarkable results by using angioplasty on MS patient's veins, you would think the MS Societies of the world would be embracing this as the most remarkable advancement in 70 years for MS patients. Sadly, evidence is showing that the societies sat on and deliberately hid a neurologists paper written in the 1970's that stated MS is vascular in nature and could be corrected. The societies' new tactic if you question this on their online forums, you will be banned and the question deleted. Ignoring the truth does not make it go away.

Having MS is not the end of the world. You may wish for it at times, but it really isn't. You can also have a lot of fun with your MS. My favorite saying when someone wants me to do something that I don't particularly care to do has become, "I'm sorry, I'll be sick that day." MS can get you out of anything including jury duty. Doing this is actually more beneficial for your health than you may think. The most common trigger for MS relapses and  flairs is stress. If you have to go to some function that you don't want to be at, you will become stressed. Stay home and your body will thank you for it. 

Although the cognitive impairments may prove to be disheartening and disturbing at times, you can still have fun with it. Especially if you have kids around. I myself successfully convinced a 10 year old that it is only logical to keep your liquid dish washing soap in the refrigerator. I still have no idea why I kept putting it in there. But I have a friend that keeps putting her laundry into the dishwasher. It happens, have fun with it.

You can also have a lot of fun with "mood swings" It is no wonder we get them. Our bodies and brains are wreaked with neurological damage. We are treated as outcasts and malingerers. With MS you can actually say all the things that you would never have said before because someone might think badly of you. So when you are standing in front of your doctor and he says something stupid, make sure you tell him so. Say what you want, when you want, and to who you want. If they don't like it and you feel bad, blame it on the mood swings, you can't help it as they are actually brought on by other people's stupidity. Plus keeping it bottled up in you just adds to the stress that is killing you. 

With an MS diagnosis you are given two choices. You have to decide which path to take. You can take the "curl up and die" attitude which would be just accepting that you are going to suffer and die, or you cling to that last hope that that pharmaceutical which is actually killing you faster, will eventually work. Or you can take the "fight back" attitude. This one may take a bit more effort but will be well worth it in the long run. This includes not listening to someone with a hidden agenda, researching information and double checking all that you find, and understanding your own disease. Then and only then, you will be able to make an informed decision on what form of treatment you want to attempt.

Guess which choice I took? 

Sunday, February 27, 2011

Open Letter to the Nova Scotia MS Clinic

Feb 27, 11

Dr. Verandar Bahn
Dept. Head NS MS Clinic

Dear Dr. Bahn,

I would like to bring to your attention that my life has been threatened by one of your clinic's doctors.

If at anytime you think the content of this letter is insulting or condescending, please rest assured that this is a pale comparison to how I was treated at your clinic on Thurs. Feb, 24 by neurologist Dr. Richard Leckey.

I never asked for this appointment, my requests for an appointment with you were ignored last fall when I was dieing. Therefore, the bill for my consulting services and travel expenses to attend this meeting will be sent by postal mail.

Dr. Leckey was insulting and condescending, but what concerns me more is his statement of not knowing what stenosis is. His credentials are now questionable as stenosis is covered extensively in your first years of medical school. Dr. Bahn, I learned stenosis in my military first aid training. Or possibly Dr. Leckey was acting that way he was to impress the uninvited guest to that meeting, that I can only assume to be a pharmaceutical representative. Regardless, it was unacceptable. If Dr. Leckey does in fact know what stenosis is, then he blatantly lied to me. This is also not the first time I have been lied to by a neurologist from your clinic.

I have also had the displeasure of meeting neurologist Dr. Alex MacDougall who told me that, “it would be impossible for me to have MS as the disease does not cause pain and only affects females”.

Your clinic doctors are obviously not qualified to be practising medicine in this country. And you Dr. Bahn, are guilty of misconduct yourself by purposely modifying medical documents on a patient that wanted to travel for the CCSVI procedure. You did a very good job of assessing her as being much healthier than she actually was. Unfortunately, those records do not coincide with your previous observations. So that patient and her husband are anxiously awaiting her next appointment with you.

It is all fine and good for you and your doctors to make your own rules, besides being treated the way I was, I have been denied aftercare by Dr. Richard Leckey because I left the country to save my life. This is a direct contradiction to what was said to us as patients by our Health Minister and is a direct threat against my life. As much as it pains you, you do not have all the facts and we know it as well as you. Your agenda now is to try to rake in as much money as you can off the backs of the sick and suffering people in this province while you still have time. Congratulations on being awarded two new clinical trials that should help with that.

Unfortunately, I am the person that exposed what the Novartis Gilyena sales reps were saying to and about MS patients. You can read it on my blog here as well as this letter and plenty of other tidbits proving that you do NOT have the MS patients' best interests at heart.

This new wonder drug that you are now going to push on the people of this province is responsible for the deaths of two people in their clinical trials. At a yearly cost of $50,000 per patient, and almost 3000 people suffering with MS in this province, you stand to lose a lot of money if the CCSVI treatment is allowed to be performed.

What this has boiled down to is a difference in Religious beliefs. You and your neurologist friends think you are God. Even other doctors bow down to your arrogance while secretly laughing behind your backs. Dr. Bahn, you are no god. You are nothing more than a man profiting off the sick and dieing while standing behind a glass wall.

As a person living with a fatal form of MS, I will not be treated the way I was treated by your doctor. I have bowed down, begged, and pleaded for help from the Health Minister and people like you Dr. Bahn. I have received nothing. That ends now.

Last November while at death's door, I, with the help of many friends, snuck out of this country to get a procedure that you condemn in an attempt to save my life. This was a calculated risk that paid off. I am still alive and getting stronger everyday. The Health Minister sent me a confirmation letter of her denying my compassionate request, with that, she gets the $12,000 bill for my procedure. Her refusal to even acknowledge my request will be her political suicide. You, on the other hand, may be facing criminal charges.

You and your doctors think the people in this province are uninformed. Rest assured you couldn't be more wrong. I would expect your doctors to start having more visits similar to what happened Thurs. The MS patients worldwide are banding together to teach others of the lies and destructive actions you and your colleagues are pulling.

Seventy years ago, the Neurological Societies convinced some obviously ill informed people that MS was an auto immune disease. You have had 70 years to prove that, and all you have proven is that you give us drugs that kill us and at best case are no more than 30% effective for less than 10% of the people using them for our progression. Even that is subjective. The poisons you were feeding us weren't killing us fast enough, so you moved patients that didn't know better into trying chemotherapy treatments. Everyone of those patients is doing worse and will die. Chemotherapy actually kills more people than cancer, but is a great source of revenue for you. The offer made to me was for “high” doses.

We as patients have tried the diplomatic approach with you and the Health Minister. We have asked for meetings, we have shown proof, yet you continue to ignore and insult us. As well as insult other doctors for having the decency to help us. We will not stand to have our lives threatened and jeopardized for your personal greed. You should consider the hundreds of patients that have left or are leaving for treatment as the rock that is going to break your glass wall.

If Dr. Gerald Mckean and the other vascular surgeons and interventional radiologists in this province that are qualified to perform the procedure continue their cowardly actions of not standing up for us as patients because of fearing a bunch of misleading neurologists, they will be dealt with accordingly. Thanks to the actions of you, your doctors and the Honorable Maureen MacDonald, the time of diplomacy has ended and if you won't help us, it is time for you to step down.

Dr. Bahn, all we as patients have ever asked is to be heard. The Hippocratic Oath states that a doctor is to do no harm. Dr. Bahn, ignoring us will kill us. Those of us that have had the treatment have for the most part, regained some quality of life and dignity. More and more are getting better everyday. Some of us like me, are now able to live a bit longer with our families. But we still have MS and we still need help.

We need proper follow up care such as venous ultrasounds to ensure proper blood flow is being maintained and monitoring for blood clots. This is already done in this country for patients that have had the same procedure for non-MS related issues. When we complain, we do not need a drug. We need you to listen to us as it is the drugs that we are complaining about. We know CCSVI is not the answer, but the benefits have more than proven it to the patients that you should be following and tracking those of us that have had it done. Above all, we need you to start treating us with at least the respect we deserve as humans trying to stay alive.

Marcel Gignac