Sunday, April 12, 2015

Snake Oil Multiple Sclerosis safety on the web. A fool and his money...

Well it is going on 5 years now since I was first diagnosed with Multiple Sclerosis. I am by no means a doctor but I have attended enough drug company presentations, met enough neurologists and read so much about Multiple Sclerosis in those 5 years that I can say that I know when something is a scam.

Since the dawn of time there has always been snake oil salesmen. It is pretty sickening that these people still exist today to prey on the less fortunate. I recently ran across one site about a "Natural Cure" for MS. This pos huckster claims the following:
 " What does this mean? This means you should be dealing with the REAL problem: Your "overactive immune system" is the problem we need to deal with.  Taking drugs to kill the symptoms may temporarily help but they are NOT the real solution. I used to give my patients Copaxone (glatiramer acetate), interferon beta-1a/1b injections, courses of steroids and more but they offered no REAL help. They may have eased the symptoms for a while but this is not the real solution and nobody claims it is."

The truth is NONE of the Disease Modifying Therapy (dmt) drugs are designed OR claim to help any Multiple Sclerosis symptom. And any drug rep from the currently available DMT pharmaceutical company that tells you that is LYING and should be reported to the FDA. DMT's only help slow and sometimes prevent progression of the disease which in turn limits the number of relapses a patient has. Steroids which is not considered a DMT does ease symptoms because it reduces swelling that is going on in your brain. But Copaxone, interferons, etc do NOT ease symptoms as stated above. I can not fathom a Neurologist worth a pound of salt even saying this!

I am not going to give you the website for the above huckster but he is charging $47.99 for his "cure" and of course he has an affiliate program that he pays people a small stipend to propagate his BS throughout the web. Google some of the quoted text above and you will easily find this morons site. 

The whole point of what I am getting at here is, we are so desperate for a cure (or at least relief of symptoms) that we will try just about anything. Desperation should not be a moniker to allow you to believe everything that is printed on the web. 

So what IS proven to help with the symptoms we are faced with from Multiple Sclerosis? Here is the thing..while most patients may experience SOME similar symptoms, very few experience ALL of the same symptoms.  Read that last sentence again and commit it to memory. 

What this means is that Multiple Sclerosis being an autoimmune disease that affects your brain and central nervous system is one of the most unpredictable and challenging diseases that researchers and doctors have to deal with. The brain where most activity(not all as some people have activity solely in the spinal cord) happens is still quite misunderstood. There are trillions of connections in the brain. Trillions with a T. 

There have been brain mapping projects for hundreds of years. Humans have tried to learn how the brain works and only now are we STARTING to understand somewhat how it works. Having a daughter who died from a deadly cancerous brain tumor, I have spent the last 15+ years following brain cancer treatments. We still do not have a cure for brain tumors to this day. We simply do not have a full understanding of brain tumors because their symptoms and prognosis are so unpredictable just like MS. Brain tumors if left untreated will most likely kill you. That is rarely so nowadays when it comes to Multiple Sclerosis.  

So that is a long winded laymans explanation why your doctor can not tell you what is going to happen, if a certain DMT, diet, jumping jacks, etc. will or will not help and whether or not you will progress to the point of being in a wheelchair. It is also THE reason why one treatment  slows or helps prevent relapses more for one than it does in another person, and why one possible persons method of relieving their OWN symptoms will NOT work another. 

One thing IS certain, the DMT's that the huckster describes above as being so bad for you have MODIFIED the course of the disease for many many people. It is hard to prove exactly how many..because of the unpredictability of MS. 

So I attended an interesting MSfocus group this past weekend and while I can not divulge exactly what was discussed, I will say that there was concurrence on a few things that do help. 

Basically it was unanimous that reducing stress, a healthy diet, and staggered mild exercise (walking, exercise bike, yoga) helped people at least feel a little better. While it was very difficult,we tried to come up with solutions that could "fit" most all patients that have MS because not all MS patients experience the same symptoms. 

Those that were affected by heat for example suggested limiting their time in it or used cooling products. Though I met one gentleman recently at an event with MS who liked going in the Hot Tub daily! This is a excellent example how we had a hard time doing this. It all boiled down to healthy living and is something that is not really MS specific.

One thing I myself have personally found that helps is taking a probiotic. I have suggested to others I have met with MS and they have tried it with some good results. There are many studies starting about good flora in the gut and how it affects disease. It is an easy try to see if it helps and I will not charge you a penny for my advice. Go get yourself a bottle of Phillips (brand) Colon Health and take it for a month and log daily how you feel. If after a month you are not feeling at least a bit better. Stop. No harm. But after you stop, also log daily how you feel for a month and note any differences. Make it your own experiment. You can get Phillips about $18 a bottle at WalMart. 
Another of MY things that work is eating pineapple. I have other issues besides MS but I learned that pineapple is one of the main ingredients used in Pancreatic Enzymes given to Whipple Surgery patients to aid in digesting their food. I eat just a small cup of pineapple a day instead of the enzymes and my body functions properly when I do. 

Every time you find something natural that isn't harmful that makes you feel better write it down and make it a habit. If something is safe..there is NO reason not to give it a shot. You CAN feel better with MS. 
Researchers claim to be close to a cure. Lets hope that is true. But until them, don't be sucked into the drivel spewed by the scum of the internet. 





Saturday, April 4, 2015

Approved Disease Modifying Drugs(DMD) for Multiple Sclerosis

The following are the approved Disease Modifying Drugs(DMD) for Multiple Sclerosis.


Brand name: Betaseron® 
Chemical name: interferon beta-1b
Frequency: Every other day; subcutaneous (injected just under the skin)
Year approved: 1993
For more info or financial help: 800-788-1467, betaseron.com/betaplus/affordability
Brand name: Avonex®
Chemical name: interferon beta-1a
Frequency: Once a week; intramuscular (injected directly into a muscle)
Year approved: 1996
For more info or financial help: 800-456-2255, msactivesource.com
Brand name: Copaxone®
Chemical name: glatiramer acetate
Frequency: Daily; subcutaneous
Year approved: 1996
For more info or financial help: 800-887-8100, copaxone.com/aboutsharedsolutions.aspx
Brand name: Novantrone®
Chemical name: mitoxantrone
Frequency: Every three months
Year approved: 2000
For more info or financial help: nationalMSsociety.org/novantrone
Brand name: Rebif®
Chemical name: interferon beta-1a
Frequency: Three times weekly; subcutaneous
Year approved: 2002
For more info or financial help: 877-447-3243, mslifelines.com
Brand name: Tysabri®
Chemical name: natalizumab
Frequency: Every four weeks
Year approved: 2006
For more info or financial help: 800-456-2255, msactivesource.com
Brand name: Extavia®
Chemical name: interferon beta-1b
Frequency: Every other day; subcutaneous
Year approved: 2009
For more info or financial help: 800-245-5356, patientassistancenow.com
Brand name: Gilenya®
Chemical name: fingolimod
Frequency: Once a day 
Year approved:
 2010
For more info or financial help: 800-245-5356, patientassistancenow.com
Brand name: Aubagio®
Chemical name: teriflunomide
Frequency: Once a day
Year approved: 2012
For more info or financial help: 855-676-6326, MSOnetoOne.com
Brand name: Tecfidera™
Chemical name: dimethyl fumarate
Frequency: Twice a day
Year approved: 2013
For more info or financial help: 800-456-2255, msactivesource.com