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 webmd.com. 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.