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? 





34 comments:

  1. Wicked!!! (apparently that means awesome my daughters tell me)
    So good to read your voice Marcel!!!
    BTW I laughed what was left of my butt off..that's okay 'cause pancake butt is good too!!
    So glad you're here man..so glad you're here!!

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  2. Very well said.....You nailed it!

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  3. I so totally have said for years that men are just more stoic and when they finally get sick enough to whine they are in the last stages. Same goes for my family. Supposedly not one of my relatives has ever had MS (CCSVI) but they never went to Dr's!!! They sucked it up, self medicated or died! So I am certain a couple must have had it.

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  4. RE: Name calling. I posted a video, "It's Over Steve" on YouTube, and got this comment from a Harper disciple: "You contribute nothing to society you only suck from the government teet . That is why you don't like Harper because like all parasites you want more." Now, that is a first. I never realized having MS and being unable to work because of it made me a parasite! Now I have a new role in life!

    Marcel, I'm glad you and I, and so many of us out here fighting for everyone's rights, chose the right path. We will be victorious.

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  5. LOVE the "Laughing what was left of my butt off..."!
    On a more serious note, honesty is the best policy! The likes of which we will never see in our government. Too many issues needing resolve would change the economical position of the one percent of people who control these issues, to their disadvantage.

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  6. I loved this. I myself am still in the middle of should I take these meds?....who knows if they are helping really..and I worry about how they will affect me later down the road or do they really slow down progression? Will I be kicking myself in the butt years later and thinking I should of stayed on my injections? I go back and forth in my mind trying to decide what to do. My Neurologist let me decide what med I wanted to take. He named them...I had done research on them beforehand....and I made the choice. I did mention to him at one point that I was concerned and had not been taking my meds regularly and was questioning if I really needed to be on them and he said that he has seen a significant difference in patients that hadn't had the option back then for these meds with MS and the patients now that are on these medications. He also said something along the lines of I don't want to be regretting my choice one day when I could wake up and be in a wheelchair and I had stopped my medication years back.

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  7. This is one of the most honest and relatable articles I have read in some time. My husband who has progressive MS sent it to me (I have relapsing remitting MS), and I have to say I laughed till it hurt! Well said and great truths!

    Peace to all of you!

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  8. theres lots of greed and corruptions going on all to do with the drugs and charitys and lots lots more too

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  9. way back in history was a Prince related to our Queen in the century back then was NO drugs and he lived to be 56 .

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  10. my gf has MS, she is 24 i'm 26. what can do to help her?

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    1. Learn as much about MS as you can. Realize that fatigue is a huge issue, but don't hang the "Need a nap" sign around her neck. She'll tell you when she can't handle anymore. Don't wait to be asked to do things like the dishes. If she's washing, go wipe. If they are in the sink, do them without making it a show. Help her keep track of where things are but putting things back where the belong. Don't think she's useless and that you have to do everything for her. Talk to each other openly. Read to her, romance isn't dead, so romance her. Find out if she wants you to drive or she wants to drive. Eat healthy food. Stay away from sugar excesses, fat excesses etc. A little bit isn't bad but nothing but chocolate donuts will bring other problems on. Go to the doc with her and talk to the doc about how you can help. Been married for 36 years and had the disease for better than half. When I told my husband to go live without me, he told me I was worth the adventure. You are worth keeping and so is he.

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  11. Thank you. I am going through a ROUGH patch where no one close to me knows what to say/do/feel etc. I have been feeling extremely sad and hopeless; I happened upon your post and LOVE it! I appreciate your honesty and candor - I'm printing this and keeping it close for when I feel nobody understands. You do and having at least one other person "get it" is enough for me.
    Cheers, Alison

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  12. Just wanted to say as a fellow MS patient for over 7 years now, GREAT ARTICLE! So many of the MS information out there is sugar coated, it was a relief to hear an honest opinion from a fellow patient.

    I live in Colorado, USA. I don't know if you heard but we recently legalized all marijuana use in our state. I've actually been a registered Medical Marijuana patient in my state for several years now. It has literally changed my quality of life! I am so glad that you talked about it on here. Not many people will discuss it for fear of legal action, but I can tell you as someone who has access to the highest medical grade cannabis in the world (yes we're better than Amsterdam or California!) that as far as symptomatic relief, nothing can compare! I was on over 12+ pharmaceuticals and I felt like a zombie. Once I started to use Cannabis, I was able to drop all but 1 of my medication and have been doing so much better ever since!

    Keep up the good work! And keep reaching others with your message!

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  13. I'm undergoing testing to determine if I have MS right now. I've been having a lot of the telltale symptoms and I've been so afraid... so, so afraid. But after reading this blog I feel like there's hope. Thank you so much for writing this. Truly.

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  14. Canada now have some law suits going on with the MS drugs which I said would happen a long time ago. Also a law suit in Canada is going ahead to a neurologist whos been naysaying CCSVI too

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  15. chi conosce e pubblicare il documento citato ? : " Purtroppo, la prova sta dimostrando che le società sedevano su e deliberatamente nascosto una carta neurologi scritta nel 1970 che ha dichiarato SM è vascolare in natura e potrebbe essere corretto. "

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  16. BRAVO Marcel!!! Well written, a definite keeper.......MS (26 years) and not in a good space, I needed the grin. Thank you.

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  17. Because I can't stand the pain anymore and my doctors are sending me for tests that don't make sense I have been googling symptoms. Found your blog and a light just came on. I will contact my doctor on Monday. Thanks Marcel. PS I don't see any recent updates - are you okay?

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  18. You nailed it!! So happy I came across your article. Im on chemo for my ms. Im so afraid I will die sooner from all these medications. I was diagnosed at 16 im 29 now.

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  19. Tell it like it really is: 👊 yes Meds for us is POISON. I feel like a cash cow, I am now on Gilenya (pill better than shots) to me.

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  20. There is not a day that goes by that I dont fight fatigue. I fight dizziness constantly. I fight numbness and 100 other feelings I could never describe. However 12 years and fighting. I will not be defeated. I have never took one treatment. I drink redbull and Advil. :) good luck friends!

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  21. Other people are such assholes. I have lost my 2 best friends since being diagnosed--I knew them for 30 years. I swear, they just found a way to distance themselves from me--sick friends are such a drag! My family is barely any better. They act surprised every time I mention I am ill with MS--and I dont mention it often! But, hey, I look good. I wish my MS on them...:)

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  22. Follow me on Facebook PictureMe Surviving MS I would love your support

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  23. Just looking for someone to talk to. My Dad has MS. Diagnosed....20+ years ago. I can remember going into a pub say ten years ago when he still walked (holding onto every door handle, chair, shelf, stand, legs bent sometimes his knees practically on the floor but not 'in one of them blasted contraptions') and we'd just walked in. Two blokes at the bar sniggering saying think he's had enough. I was livid and felt like punching thier faces in - my Dad just said, 'some people are ignorant Son. They just don't know and they can't help it.' He was honestly not upset by there comments - he's now really poorly and still the bravest man I will ever meet. He never had the chance to be a Dad to me like most but he's a real example to behold. I wish there was something that could help you all. YNWA..... (PS. YNWA means you'll never walk alone. It's a football / soccer thing, as in Jerry and the pace makers)

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  24. I loved the honesty of your post. A friend was diagnosed with MS through the VA and was told that if she chose to forego any treatments her life expectancy was five years. She was also told that radiation and Chemotherapy were two of the treatment option. I have other friends with MS, have been to doctors appointments, have read a lot of literature and I haven't come across information a limited life expectancy or radiation and chemo as treatments. Can you enlighten me on either of these? Thank you!!

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  25. Sorry about that...didn't proof read before selecting "publish". :)

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  26. I was just diagnosed with MS, and I am a 15 year old girl. Lately, I've been really scared about this because I had been dealing with these symptoms for so long, I thought they were normal. When they diagnosed me, I was just happy because I finally had a reason why I run out of breath walking to class or up to my front door. Although I was happy about that my family started treating me like I may die tomorrow. This gave me clarity and proof I am not alone. Thank you.

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  27. Am not even sure how I end up on this page but am happy I did. I particularly like the part where I can say shut up n blame it on my mood swing. I am so tired of I know this is best for you and it's all in your mind. All of a sudden this people became doctors. After ten years with this illness n no treatment, I have to give God all my prays. Keep trusting in him people. One day a cure will come

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  28. I write about my MS journey in my blog, check it out everyone: justicejamesb.blogspot.com

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  29. I have been struggling with a debilitating​ SOMETHING that the doctors/PT; all 5 of them are trying to figure out. Whether it's MS, Parkinson's or any other disease know to man, it's slowly killing me. Sometimes the pain in my back is so severe I can't walk. Or my balance is so off I trip or fall. Oh did I mention the extreme fatigue, tongue prickles, not being able to speak bc I can't find my words. Or numbness, tingling and weakness a d tremors in my body. But worsted of all is pain of worrying about losing my job because of all these ailments, paying all my healthcare bills, bc these doctors have sent me everywhere, or the anxiety I feel about all of it!

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  30. Fantastic and so true to life I can relate to all except the medicine costs as its all free here in UK. End of the day we are all going to die ms or bot

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