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?